Planning Ahead

It can be difficult to know what life will be like after a lung fibrosis diagnosis. Each experience is individual and no one can predict what your journey with the disease will be. There are a few things you might wish to consider:

• It is a good first step to understand more about your diagnosis and treatment plan.  Pages 16-19 of ILFA’s Patient Guide contain guidance on getting the most from your medical consultations.
• Lung fibrosis patients should be referred early to palliative (or supportive) care and, if you are a suitable candidate, to transplant assessment. Discuss both of these options with your specialist medical team. Find our more about palliative care by viewing ILFA’s Let’s Talk Palliative Care video. More information about lung transplantation can be found on the Mater Hospital’s website.
• Planning ahead also means utilising all of the services available to keep you both mentally and physically healthy. These services can include pulmonary rehabilitation, psychological counselling, and home supports. To find out more about your rights as a lung fibrosis patient, see ILFA’s Patient Charter.
• A care plan makes your wishes clear at all stages of your disease. It is a key part of an effective support system. Agreeing a care plan is a collaborative process between you, your healthcare team, and potentially your family or carers too. More information about care plans can be found on page 34 of ILFA’s Patient Guide.
• It’s also important to organise your financial records and write or update your will. More information about making a will can be found on the Citizen’s Information website.

These are just a few considerations. To hear the ILFA community’s view on planning ahead, watch our Planning Ahead session from the recent ILFA Patient Summit.