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Carers

Having good social support when undergoing a transplant is vital. The Queensland Liver Transplant Service values and appreciates the enormous role which carers play, in helping their family members or friends both before and after receiving a transplant. Carers provide everyday supportive and practical care, assistance, reassurance, compassion and oversight. This type of care also keeps an eye out for any medical concerns and alerts the treating team to these.

The hospital does not provide personal, private or unpaid carers to patients either before or after the transplant. The treating team does provide full professional care when the patient is hospitalised and attending the outpatient services. If you do not have a support person either before or after the transplant, please speak with the QLTS social worker. Some patients already receive a home support package due to their pre-existing care requirements, provided by community organisation. These supports could be through:

There are a number of support services for patients and carers that might be useful.

Please also visit:

QLTS staff can provide information and support both before and after transplantation. Never hesitate to call if there is anything we can help with.

What to expect as a carer

Before a transplant

Before a transplant, patients and their treating team are always working to maintain patient wellbeing. The aim is to support patients be in the best condition they can for the surgery. Some patients experience changes to their physical, emotional, and cognitive (thinking and mental processing) health whilst waiting for a transplant, due to the impact of their liver disease. This can be challenging and distressing for patients, their carers, family and friends. The treating team are familiar with these situations and are always happy to advise and assist.

Carers can help by:

  • Providing oversight and reassurance
  • Giving planning assistance
  • Manage day to day activities including shopping, food preparation, home maintenance and transport
  • Providing emotional support
  • Just being there for the patient
  • Telling the treating team of any new or other concerns.

Read more:

After a transplant

After a liver transplant, patients will be hospitalised for 7–10 days on average. During this time patients are encouraged to focus on breathing, walking, gradual eating and learning about their post-transplant medications. Family and carers are encouraged to visit the patient during this time in hospital.

Prior to the ward discharge, patients are provided day leave, whereby they leave the ward for several hours. Their carer or other support person will need to be with them. The following day, overnight leave is organised, after which the patient attends the ward transplant clinic the next morning. If all is well, the patient is then officially discharged from the ward.

The main care responsibilities start from the when day leave occurs. The type of post-transplant care required will gradually change and reduce over time as the patient recovers.

Outpatient clinics

The first three months after the transplant are very important. After discharge from the ward, the patient attends the Princess Alexandra Hospital liver transplant outpatient clinic daily or near-daily for a few weeks.

The liver transplant clinic appointments continue during the ongoing months but reduce to once a week, once a fortnight, then monthly.

There can be tests or procedures in between clinic appointments. The treating team is working all along to make sure the patients are recovering well from the surgery and managing their medications.

The carer will need to help the patient arrive at pathology by 7am for a blood test then get safely to the clinic for their appointment. This support is especially important during the first few weeks. The carers assist with transport to and from the hospital. This could involve driving the patient, organising community transport, or assisting with navigating public transport.

Some patients will need assistance with mobility in the early weeks. Wheelchairs for use with the hospital grounds are available at the main entrance and from the walkway outside the Spinal Injuries Unit (walkway between Point Parking and the main hospital). Mobility aids can be hired from chemists if required, but most patients can move around independently without aids, after their discharge from hospital.

Daily living activities

Carers assist with daily activities such as such as shopping (online or at the store) cooking, cleaning. The patient is usually able to manage showering, dressing, eating and mobility by the time of discharge from hospital, although light assistance may be needed initially, depending on individual recovery.

Carers should also support and encourage light activity and exercise—the treating team will advise recommended activity levels for each patient.

Patients must avoid large public venues (such as sporting events) for the first few weeks after their transplant due to the risk of infection due to reduced immunity.

Monitoring

Part of the carer role is to monitor the patient’s general wellness and alert the treating team to any concerns. The treating team will advise you what to look out for, however please feel free to contact us at any time to discuss any concerns. If you observe any of the following symptoms worsening please contact the team:

  • Fatigue
  • Cognitive impairment—confusion, vagueness or just “not themselves”
  • Reduced interest in food
  • Reduced physical energy or strength
  • Excessive pain.

Sometimes patients need to return to surgery in the early days or weeks. Some patients have needed to stay in hospital for several months after the transplant. Inpatient or outpatient rehabilitation might be necessary. Every situation is different. It is important to be prepared for anything.

The impact of the immunosuppressive medications can be significant for some patients, especially in the first few days or weeks after the transplant. Patients can become mentally affected—seeing and imagining things, paranoia, inappropriately over-confident, or emotional (easily crying for instance). Carers are well placed to advise the team for help or advice. If needed, staff can provide professional assessment, support and advice.

Ongoing care

The full recovery from a transplant generally takes the better part of a year, however most patients will no longer need the formal assistance of a carer after 2–3 months.

Financial support for carers

There are no specific “transplant” carer payments available from Centrelink. Carers sometimes qualify for either a Centrelink Carers Payment or Carer’s Allowance. But it is important to note that neither payment is automatically provided to the carers of pre-and post-transplant patients. An assessment process is required for each individual. Read more on the Centrelink website.

Practical arrangements

Carers might need to take time away from work or other commitments during the first few weeks or months following the transplant. Remote work arrangements are often now available to carers so they can continue their employment in either a full or part-capacity.

If a letter is required for an employer to confirm the patient’s circumstances and post-transplant care requirements, please contact the social worker.

Carers can share the care responsibilities with family members or friends. Some carers share the time by splitting up days/weeks or daytime/overnight care responsibilities.

Time out

It is important for carers to have regular “time out”. This could be for a coffee/meal, a rest, to read/watch favourite TV shows, to go to a shopping centre/movie, to get some exercise (swim, home gym–use downloaded apps or own routine, fitness centre, walk or jog, yoga, tai chi, etc.), visit other family/friends.

There is nothing gained by an exhausted carer. Carers are hugely important in transplantation and maintenance of their good health and wellbeing is as important as that of the patient’s.

Last updated:
25 November 2022
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