Carers

Having good social support both before and after a transplant is vital. The Queensland Kidney Transplant Service values and appreciates the enormous role which carers play, in helping their family members or friends who might be on dialysis or receiving a transplant.  In the first few weeks after a transplant, the post-transplant carer provides everyday supportive and practical care, assistance, 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 anyone who is able to assist you as a carer in the weeks after the transplant, please speak with the QKTS 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 Aged Care, NDIS or Community Care (under 65’s).

QKTS staff including the transplant social worker, can provide advice, assistance and support both before and after transplantation. Never hesitate to call if there is something we can help you with.

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

Please also visit:

• Kidney Support Network   https://www.ksn.org.au/
• Kidney Health Australia    https://kidney.org.au/

What to expect as a carer

Kidney transplant recipients often need support both before and after their transplant.

Before a transplant

Before a transplant, patients and their treating team are always working to maintain as much stable kidney function and general wellness as possible. The aim is to make sure the patient remains well enough for a transplant, and is in the best condition they can be for the surgery.

Carers can help by:

• Provide oversight
• Help with planning
• Manage day to day activities like cooking, shopping, home maintenance and transport
• Help with dialysis
• Emotional support

After a transplant

The patient will be hospitalised for at least one week after the transplant, on average between 5–7 days. During this time patients are encouraged to focus on breathing, walking, gradual eating and then learning about their medications. Family and Carers are encouraged to visit the patients during this time in hospital.

The main care responsibilities start when the patient is discharged. The care required will gradually reduce over time as the patient recovers.

Outpatient clinics

The patient will need to attend a daily outpatient clinic for up to 3 weeks. The appointments will then reduce to 2–3 times a week for the next 3–5 weeks. The carer will need to assist the patient to arrive to pathology by 7am for a blood test then get safely up to the clinic for their appointment. This support is especially important during the first few weeks.

Generally the carer will organise breakfast for the patient after the blood test (bringing food from home or visiting a café). The carer would also assist with transport home after the appointment.

Some patients will need assistance with mobility in the early weeks. Wheelchairs unit for use with the hospital grounds are available at the main entrance and from the walkway outside the Spinal injuries unit (walkway between Metro carpark and main hospital). You may also hire mobility aids from chemists.

Daily living activities

Carers will need to assist with daily activities the patient is unable to undertake themselves such as shopping, cooking, cleaning etc. 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 (eg sporting events) for the first few weeks after their transplant due to the risk of infection and affects of immunosuppressive medication.

Monitoring

Part of your role as a carer will be 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 us:

• 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 for some. Every situation is different. 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). Let the treating team know if you need help or advice. Staff can provide professional assessment, support and advice.

Ongoing care

The recovery from a transplant generally takes the better part of a year, however most patients will no longer need the 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.

Practical arrangements

Carers will need to take time off work or other commitments during the first few weeks or months following the transplant. Once the call is received for the transplant, there will usually be 7 days before the patient is discharged, which give the carer time to make necessary arrangements.

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

You may share the care responsibilities with other family members or friends. Some carers share the time by splitting up days/weeks or daytime/overnight care responsibilities. After the first few weeks it’s usually possible to work remotely if necessary as the patient requires less support.