Supporting A Loved One

Every lung transplant patient have primary supporters who also need support

We understand that supporting your loved one will have a huge impact on you. There are some of us on the Lungitude Board and Fundraising Committee who are also primary supporters and have first hand knowledge of this.

We also know that the health system is mainly designed to support the patient. While caring and supporting others can be deeply rewarding, it can be emotionally and physically draining too.

We therefore realise that you will understandably have many questions about what’s involved, for both your loved one and you.

The following resources have been compiled to help you, and we are focusing on developing more this year. We also welcome ideas from primary supporters within our community as we create resources that will make a positive difference to you.

Note: While we make every effort to make sure the information in this website is accurate and informative, the information does not take the place of professional or medical advice. We can’t guarantee accuracy of any third party content or that it will apply to you.

Lungitude Online Peer Support Network

Join our Lungitude Online Peer Support Network and connect with other lung transplant patients and primary supporters.

We recognise that there is a need for further support for patients beyond just the physical, and that every lung transplant patient has primary supporters who also need support. We have established a Lungitude Online Peer Support Network, with support from the Lung Foundation, to enable the sharing of ideas and tips for managing the practical and emotional challenges of the lung transplant journey.

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Lungitude Patient and Supporters Video Series

In this video you can hear directly from four primary supporters of lung transplant patients who share their insights and tips. If you are interested in participating in future videos as a primary supporter please contact us.

This video features four lung transplant patients sharing their journeys and mental health tips. If you are interested in participating in future videos as a primary supporter please contact us.

Discover practical tips from four lung transplant patients who share their journeys and what has helped them.

Lungitude Primary Supporters Booklet

We recognise that there is a need for further support for primary supporters who may also be dealing with stress. Our Coping with Stress as a Transplant Supporter Booklet is a great resource that you can read online or download for printing. We encourage you to share it widely with anyone who may benefit.

You may also like to check out our Facebook Page where we share all sorts of articles and stories.

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Transplant Australia is a charity which supports transplant recipients and their families; people on the waiting list, donor families, living donors, healthcare professionals and all those touched by organ and tissue donation.

They are most well known for their programs which encourage physical activity to increase survival rates in transplant recipients, like the Australian Transplant Games and Fit for Life.

Transplant Australia has information about Support, recognising that as a primary supporter you are an integral part of the circle of support that helps your loved one pick up the threads of their life. In their Carers section there are practical solutions to lighten your load as you care for the recipient in your family; tips for self-care, and a comprehensive list of resources to assist you to cope with the pressures of caring.

This also includes wellbeing, work and socialising, and assistance schemes.

You may also find it very useful to go through the extensive information about Living with your Transplant which steps patients through what to expect from the few days through to what they can and can’t eat, to the way they manage relationships, sex, medication and travel, putting the power in both of your hands as you both navigate life after transplant.

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The Heart and Lung Transplant Trust (Victoria) Inc. (HLTTV) is a not-for-profit association whose membership consists of heart and lung transplant patients, recipients, their primary supporters and families.

HLTTV are associated with The Alfred Hospital in Melbourne and are a resource for support, education and advocacy. If you are a patient or carer of The Alfred then your loved one may be eligible for their Financial and Social Support. They also have Recipient Videos and a Gallery of Recipients enjoying life.

HLLTV has information about their Patient Help Desk, and the Pre, During and Post phases of the transplant journey, and Patient Booklets.

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The Lung Foundation is a charity that delivers life-changing research and programs that support and provide hope to people of all ages with a lung disease, and their families, at every stage of the journey.

They are focused on the needs of those living with lung disease, so their resources are also useful for carers of patients who are pre transplant managing their condition.

Their Resources section is comprehensive including: