For families and care partners

Before your loved one can join the active list, they will need to find at least 3 care partners. A care partner is a family member or friend who commits to helping with personal, practical and psychological care. If you become a care partner, you will need to be available to provide support throughout the transplant journey, from the moment your loved one joins the active list through their lifelong care.

Signing up as a care partner is a huge commitment. You will be a vital part of your loved one’s journey.

As a care partner you need to be available to support your loved one 24 hours a day, 7 days a week, before, during and after transplant. You should be prepared to provide them with ongoing support for the rest of their life. They may only need support from time to time, but it is also possible they will need support on a long term basis.

You will be asked to sign a contract accepting these responsibilities:


• Attend appointments, education sessions and family meetings
• Provide transport to and from the hospital for appointments before and after surgery
• Be available at short notice or in an emergency
• Help with planning for discharge from hospital after surgery
• Help with day-to-day tasks like cooking and cleaning, if needed
• Help with collecting and managing medications, as needed
• Be ready to contact the transplant team with any concerns
• Provide emotional support and friendship

Attending appointments

It’s helpful to attend appointments with your loved one and listen to what the doctor or coordinator says, to minimise the chance of any information getting lost.

As a care partner, you may also notice things about your loved one’s health that they do not. Appointments are a great opportunity to ask any questions or bring up any concerns. You might want to bring a notebook with you.

Driving to appointments

Your loved one won’t be able to use public transport or drive for at least six months after transplant. Care partners therefore should be available to drive them to and from appointments. As the Mater Hospital is located in the city centre, you will need to be comfortable driving in cities and on motorways if necessary.

Being a care partner is very demanding. It is important that you take time to look after yourself as well.

• Don't be afraid to ask for help from others. Know who you can call for support if you get too busy with other commitments. For example, if you have children, you will need to think about who can provide childcare while you are helping your loved one.
• You should mentally prepare for what's ahead. It can be an emotional time, looking after your loved when they're unwell.
• You might consider taking leave from work in order to care for your loved one.
• You should make time for yourself to do things that bring you joy.

Even if you are a friend or family member, but not a designated care partner, you still play an important role. You can:

• Help your loved one continue doing the activities they enjoy and live as normal a life as possible
• Provide emotional support and friendship
• Support the care partners with whatever help they need

When talking to kids about transplant, the aim is to help them understand what is happening and give them comfort. Here are some tips:

• Have lots of smaller conversations rather than one big conversation.
• Let the child lead and ask as many or as few questions as they want. Some children will be talkative and eager to ask lots of questions. Others may be more reserved or afraid to hear the answers.
• Encourage them to share their thoughts, feelings and fears. Let the child tell you about what worries them most. Their answer might not be what you expect.
• Being separated from a parent or guardian for an extended period can be a big worry for children. Let them know they will be cared for while their loved one is in hospital for transplant. Explain the plan you have in place.
• If you don’t know the answer to a question, tell them you will try to find out and come back to them.
• Be honest and consistent with the information you give them.
• The level of detail and the language you use will vary depending on the child’s age and personality.
• You may want to talk to different children separately depending on their age and needs.

The transplant team, together with NCAD, have created books to help kids understand lung transplant in an age appropriate way. These books can help the children in your family process what it means to have a lung transplant, in their own time and at their own pace.

Ask the transplant coordinator for a copy, or download and assemble the books yourself.

Breath by breath

This downloadable children's book tells the story of Ellie as she navigates her dad's lung transplant journey. Written for children aged 5-7, it offers a relatable child's perspective on the complex medical experience of lung transplant. Interactive pages throughout the story help the child engage with the topic, build understanding and express their emotions. We recommend parents or caregivers read and explore the story together with the child.

Breath by breath (PDF, 5.7MB, 44 pages)

Understanding lung transplants

This downloadable book is designed for children aged 8-12 to read independently as they learn about a parent's lung transplant journey. Through practical tips, it helps young readers understand the process while focusing on the importance of self-care. We encourage caregivers to be available for questions that may arise for the child while reading.

Understanding lung transplants (PDF, 193KB, 32 pages)

When you're around someone with advanced lung disease, it's important to take precautions to avoid getting them sick. This is especially important after transplant, when your loved one will be on lifelong medications that suppress their immune system.

If you're visiting your loved one in hospital:

• Wear a mask.
• Wash or sanitise your hands frequently.
• Don't touch your loved one's bed or any of their medical equipment.
• Don't visit the hospital if you're feeling unwell, or if you have been unwell in the last 3 days.