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A long wait: how nurses can help patients through the transplantation pathway

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Helen Castle, BSc (Hons), RGN.

Clinicians' Assistant at Papworth Hospital NHS Trust, Papworth Everard, Cambridge

Nearly 37 years have passed since the first successful human heart transplant was performed on 3 December 1967 (Barnard, 1967). In the years since, we have seen cardiac transplantation transform from a radical and controversial surgical approach (Hunt, 1998) into a mainstream treatment.

Nearly 37 years have passed since the first successful human heart transplant was performed on 3 December 1967 (Barnard, 1967). In the years since, we have seen cardiac transplantation transform from a radical and controversial surgical approach (Hunt, 1998) into a mainstream treatment.

This has improved the length and quality of life of many patients with end-stage heart disease. Current results from the International Society of Heart Lung Transplantation report survival rates between 80% and 90% at one year. However long-term survival remains largely unchanged, with 65% survival at five years and 45% at 10 years (Taylor et al, 2003). Both the success of this treatment and the increased incidence of heart failure have resulted in increasing numbers of patients being considered for transplantation.

The referral process
A GP or cardiologist usually makes a referral when the patient is no longer responsive to conventional therapy. The transplant cardiologist makes a provisional decision about each patient's suitability to proceed to a full transplant assessment. This depends on the patient's age, presenting condition, concurrent disease and medical history.

The indications for heart transplantation have always included the presence of end-stage heart disease that is irremediable by conventional forms of treatment and the absence of contraindications (see Box, page 38) that would separately limit survival (Hunt, 1998).

The names of patients selected for formal assessment are sent to the team of transplant co-ordinators. The day-to-day work of a transplant co-ordinator varies at each of the six centres in the UK. The current team at Papworth is made up of five: one of whom is a transplant assessment co-ordinator responsible for the smooth running of the assessment programme and four clinicians' assistants (CAs). The CA role came into being in 1990 and involves working with the multidisciplinary team to ensure that all agreed inpatient management and treatment protocols are carried out efficiently. As well as a role in clinical management, the CA provides a source of support and information for the patient and family throughout the whole transplant journey, starting with the admission for assessment, and then progressing through the operation and postoperative period to the time of intermediate discharge and subsequent follow-up.

The co-ordinator telephones the patient to confirm the details received from the referring consultant. This also provides an opportunity to obtain additional information about the patient's social circumstances and their feelings about transplantation. The co-ordinator explains how the service works and tells the patient about the tests he or she will undergo during the formal assessment.

While everything is done to try to alleviate fears and anxieties, it is made clear that assessment does not guarantee a place on the active waiting list.

The assessment process
The patient is admitted to hospital for three days and undergoes a variety of investigations, including pulmonary function tests, exercise tests and 24-hour urine collection, to assess the severity of their disease and to estimate its future course and rate of deterioration. The co-ordinator and the ward nurses ensure that patients are supported throughout the assessment and that all the tests are completed. The assessment period gives the potential recipient a chance to learn as much as possible about transplantation. As well as undergoing the investigations, they also meet other members of the multidisciplinary team.

Time is spent with nurses from the transplant outpatients' department, who ensure that the patients are given relevant information about postoperative care. They tell patients about the drugs they will need to take - for the rest of their lives - and the associated side-effects, as well as potential postoperative complications. Patients can then make an informed decision about progressing towards transplantation if it is offered to them. Patients are encouraged to have someone with them throughout their stay, as it is an extremely busy three days, with much information to take in.

At the end of the assessment period the patient meets the consultant cardiologist and surgeon to discuss treatment options. The timing of placing a patient on the waiting list is crucial; if the patient becomes too sick or is deteriorating rapidly they may die before an organ becomes available or be too unwell to survive the rigours of transplantation.

If the patient's condition deteriorates it may be appropriate to insert a ventricular assist device (VAD) as a 'bridge' to transplantation. In the event of the patient's condition improving on conventional medical therapy or having stabilised since referral, placement on the waiting list may be inappropriate.

The assessment may have also uncovered contraindications to transplantation, making the risk unacceptably high. In some cases the patient may be too sick following a late referral.

If a patient is considered suitable, they are added to the transplant waiting list. The patient's local team continues to care for them, with the emphasis on providing optimal care for their underlying disease and any co-morbid medical conditions.

The patient faces an undetermined period of waiting and is encouraged to keep in regular contact with the transplant team and inform them of any changes. This period of waiting is often laden with uncertainty and concerns about the future. Many patients experience anxiety and depression (Lanuza, 2001).

Psychosocial problems are common and need dealing with sensitively. Problems may be related to the areas listed on page 37.

When a suitable donor heart becomes available, the transplant co-ordinator and consultant surgeon discuss the details of the donor and assess suitability for transplantation. If the organ is considered suitable, a potential recipient is selected, dependent on the blood group and size of the donor.

The transplant co-ordinator then contacts the nominated recipient and arrangements are made for their transfer to hospital.

Unfortunately, once inspected by the surgical team, many organs are found to be unsuitable due to irreversible damage or poor function.

As well as the stress of being on the waiting list, patients need to cope with false alarms; they can be admitted to hospital many times before their transplant is actually performed.

Postoperative care
Following the immediate postoperative period the team of transplant continuing care nurses teaches the patient how to self-administer medication and how to recognise signs of rejection or infection. The patient should record their temperature and weight daily and report any changes.

Patients are usually discharged between three to four weeks after transplantation, if there are no complications. At first, follow-up appointments are very frequent. This enables endomyocardial biopsies - to exclude rejection - to be taken by the transplant cardiologist, as well as full blood screening to monitor immunosuppressive drug levels and potential toxic effects. Gradually lengthening the interval between visits increases the patient's confidence and independence.

Rejection Acute rejection of the implanted organ remains the most important clinical problem in the first year after the transplant. The Papworth transplant team currently uses a triple therapy maintenance regimen of cyclosporin, mycophenolate mofetil (MMF/ Cellcept) and prednisolone. Many of these medications have adverse side-effects and alternative agents are now being used and developed such as tacrolimus and rapamycin.

All organ allograft recipients exist on a fine line between over- and under-immuno-suppression (Hunt, 1998). Too little immuno-suppression can lead to graft rejection and even graft loss, whereas over immuno-suppression increases susceptibility to opportunistic infection and malignancy.

Rejection is not always accompanied by clinical signs or symptoms in its early stages. Endomyocardial biopsy remains the gold standard of rejection diagnosis (Hunt, 1998). Episodes of rejection are treated by augmentation of immuno-suppression. This is usually achieved with a 'pulse' of intravenous methylprednisolone or by increasing the oral maintenance dose.

Cardiac allograft vasculopathy (CAV)

CAV is the leading limiting factor of patient and graft survival in the first year after the first operation (Waller et al, 2003) (see box, page 39).

Evidence suggests that CAV is primarily an immunologically mediated injury, together with non-immunological risk factors of both donor (pre-existing disease, ischaemic injury and recipient (diabetes, hypertension, hyperlipidaemia) origin.

Hyperlipidaemia is observed in 60-80% of heart transplant recipients, with evidence showing a direct correlation between hypercholesterolaemia and CAV (Kobashigawa et al, 1995; Wenke et al, 1997). As a result transplant patients are given lipid-lowering medication in the form of a statin.


Any medical regimen involving long-term immunosuppression is associated with an increased risk of malignancy, most often lymphoproliferative disease and cutaneous cancers (Hunt, 1998). Some tumours respond to a reduction in immuno-suppression alone, but if the patient is symptomatic chemotherapy is difficult to avoid.

Cardiac transplantation is a proven, effective therapy for selected patients with end-stage congestive heart failure (Frantz and Olson, 1997). The criteria for selecting recipients are evolving, along with management strategies, because of the extended waiting times and high mortality caused by the lack of donors. The past decade has seen an era of new immunosuppressive drugs and modalities integrated into clinical practice in heart transplantation. Despite the attempts in perfecting transplant medicine, intrinsic limitations and the insufficient supply of human donor hearts will continue to prohibit timely transplantation for many potential recipients (Renlund and O'Connell, 1997).

As nurses we are in a privileged position to support patients referred for transplantation. With help from a dedicated multidisciplinary team, patients can be helped and encouraged to come to terms with their disease. Unfortunately, their long-term outlook remains uncertain, and intense investigation into chronic rejection is still required to improve long-term survival.

Psychosocial problems for heart transplant patients
Role adjustment

Family stress

Financial difficulty

Change in body image

Loss of control

Feelings of bereavement

Latest Policy
Heart transplants

A review of transplant services in the UK in September 2001 (DH, 2001) set new standards for service delivery (all centres have to have a multidisciplinary team approach, minimum staffing levels and high standards of patient information) and increased monitoring (DH, 2002). The National Specialist Clinical Advisory group is responsible for monitoring centres and 'if outcomes are not acceptable their status as a transplant centre will be revisited' (DH, 2002). The review recommended a 10% increase in the number of heart and lung transplants by 2005. To help achieve this an additional £3 million has been provided for UK transplant services and the development of the online organ donation register.


The Human Tissues act (1961), which forms the legal basis for transplantation, states 'organs and tissues may be removed if a person has recorded his or her wish to donate their organs or where the person has not expressed their view, if his or her spouse or relatives do not object to donation'. Saving Lives, Valuing Donors: A transplant framework for England (DH, 2003) makes it explicit that, 'If relatives object, donation does not take place'.

Reasons for excluding patients from heart transplantation

- Malignancy in the past two to five years, except for basal cell and squamous cell carcinoma of the skin

- Multi-organ failure, that is, irreversible liver or renal dysfunction

- Infection with HIV

- Hepatitis B antigen positivity

- Hepatitis C with biopsy-proven evidence of liver disease

- Requirement for mechanical ventilation

- Active systemic infection

- Nutritional status (BMI <16 or="">30)

- Substance abuse - including smoking, alcohol, narcotics

Source: Costanzo et al, 1995

- Psychosocial problems that are unable to be resolved and that have a high likelihood of impacting on the patient's long-term outcome, such as poorly controlled psycho-affective disorder, documented history of non-compliance

- Irreversible pulmonary arterial hypertension (fixed transpulmonary gradient >14)


- Transplantation is not contraindicated per se in patients with systemic vascular disease or diabetes mellitus, and each potential candidate should be considered on an individual basis, paying particular attention to any other organ damage outside the one being considered for transplantation.

Cardiac allograft vasculopathy (CAV) becomes a major risk after the first postoperative year (Waller et al, 2003).

It is detectable in 20% of grafts at one year and 50% at three years, using angiography. It may be evident as early as three months after the transplant (Paul, 2000).

CAV causes diffuse and concentric myointimal thickening that affects both intramyocardial and epicardial arteries and veins. It is different from native coronary artery disease, which is characterised by plaque formation and more proximal, focal and eccentric lesions (Waller et al, 2003).

As a result, traditional re-vascularisation procedures cannot be used in the majority of patients with CAV. Although 10-30% of heart transplant recipients will have partial reinnervation and thus may experience chest pain that represents ischaemic syndrome, CAV rarely presents with angina (Aranda and Hill, 2000). Clinical evidence of severe CAV is thus only apparent with the progression of complications, which include congestive heart failure, arrhythmias or sudden death.

To date, re-transplantation remains the only effective treatment for CAV.

However, long-term survival rates of re-transplantation are significantly poorer than with primary transplantation (Ensley et al, 1992). This option has major ethical implications at a time when organ donor shortage is so evident.

Author's contact details
Helen Castle, Clinicians' Assistant, Papworth Hospital, Papworth Everard, Cambridgeshire CB3 8RE. Email:

Aranda, J.M., Hill, J. (2000) Cardiac transplant vasculopathy. Chest 118: 6, 1792-1800.

Barnard, C.N. (1967)The operation. South African Medical Journal 30: 1271-1274.

Costanzo, M.R., Augustine, S., Bourge, R. et al. (1995)Selection and treatment of candidates for heart transplantation. Circulation 92: 12, 3593-3612.

Department of Health. (2001)National Adult Heart and Lung Transplant Service. Discussion Document. London: DH.

Department of Health. (2002)National Heart and Lung Transplant Standards. London: DH.

Department of Health. (2003)Saving Lives, Valuing Donors: A transplant framework for England. London: DH.

Ensley, R.D., Hunt, S., Taylor, D.O. et al. (1992)The Registry of the International Society of Heart and Lung Transplantation and contributory investigators: Predictors of survival after repeat heart transplantation. Journal of Heart Lung Transplantation 11: 138-141.

Frantz, R.P., Olson, L.J. (1997)Recipient selection and management before cardiac transplantation. American Journal of Medical Science 314: 3, 139-152.

Hunt, S.A. (1998)Current status of cardiac transplantation. Journal of the American Medical Association 280: 19, 1692.

Kobashigawa, J.A., Katznelson, S., Laks, H. et al. (1995)Effect of pravastatin on outcomes after cardiac transplantation. New England Journal of Medicine 333: 621-627.

Lanuza, M.L. (2001)Care before and after lung transplant and quality of life research. AACN Clinical Issues 12: 2, 186-201.

Paul, L. (2000)Calcium channel blockers and angiotensin-converting enzyme inhibitors in the prevention of graft vasculopathy. Journal of Heart Lung Transplantation 19: 409-413.

Renlund, D.G., O'Connell, J.B. (1997)Cardiac transplantation. American Journal of Medical Science 314: 3, 127-128.

Taylor, D.O., Edwards. L.B., Mohacsi, P.J. et al. (2003)The Registry for the International Society of Heart and Lung Transplantation. Twentieth official adult heart transplant report 2003. Journal of Heart and Lung Transplantation 22: 6, 616-624.

Waller, J., Brook, N.R., Nicholson, M.L. (2003)Cardiac allograft vasculopathy: current concepts and treatment. Transplantation 16: 367-375.

Wenke, K., Meiser, B., Thiery, J. et al. (1997)Simvastatin reduces graft vessel disease and mortality after heart transplantation. Circulation 96: 1398-1402.

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