Every lung transplant patient has a caregiver who also needs 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 caregivers and have first hand knowledge of this.
We also know that the health system is mainly designed to support the patient. While caring 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 caregivers 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 caregivers.
We recognise that there is a need for further support for patients beyond just the physical, and that every lung transplant patient has a caregiver who also needs 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.
Lungitude Patient and Caregiver Video Series
In this video you can hear directly from four caregivers of lung transplant patients who share their insights and tips. If you are interested in participating in future videos as a caregiver 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 caregiver please contact us.
Discover practical tips from four lung transplant patients who share their journeys and what has helped them.
Lungitude Caregiver Booklet
We recognise that there is a need for further support for caregivers who may dealing with stress. Our Coping with Stress as a Transplant Caregiver 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.
We are actively developing our own resources so stay tuned for even more to come. There are some exciting plans!
You may also like to check out our Facebook Page where we share all sorts of articles and stories.
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.
Transplant Australia has information about Support, recognising that as a caregiver you are an integral part of the circle of support that helps your loved one pick up the threads of their life. In the 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.
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 carers 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 may be eligible for their Financial and Social Support. They also have Recipient Videos and a Gallery of Recipients enjoying life.
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:
- Maintaining Movement Videos – Armchair and Kitchen exercises
- Better Living with Exercise Handbook (click here for hardcopy version)
- Home Oxygen Booklet
- Outdoor Air Pollution and Lung Disease Fact Sheet
- Indoor Environment and Lung Health Fact Sheet
- The Common Cold Fact Sheet
- Fitness to Fly Fact Sheet
- Influenza Fact Sheet
- Lung Function Tests Fact Sheet
- Bronchoscopy Fact Sheet
- Portable Oxygen Travel Tips Fact Sheet
- Home Oxygen Paper
- Lung Transplantation Fact Sheet
- Know Pneumonia: Signs and Symptoms
- Know Pneumonia Infographic
- The Lung Fact Sheet
- Support Groups