STEP - Support Through Education Program

The time from acceptance onto the waiting list until a suitable donor organ becomes available, provides an opportunity for the patient to prepare for transplant surgery. The more prepared, fit and healthy the patient is at the time of the surgery, the greater are the chances of doing better afterwards.

There are many ways patients describe coping with the wait for a transplant. The patient’s physical and mental well-being, life stage, outlook, experiences, family and employment situation; can all influence how they might cope. The good news is that patients often report coping much better than they thought they would. Making good choices, drawing upon one’s strengths, taking one day at a time, and asking for help if needed; are key.

Top tips

• Make sure you have a working mobile phone. It does not have to be top of the range but needs a strong ringtone, working voicemail, full charge and to be with you at all times.
• Confirm that your contact details on the hospital records are correct. Tell the liver transplant coordinators of any changes or if you need to be away from home for any length of time. It is also necessary to provide several other contact numbers for family, neighbour or others should there be any problem getting in contact with you.
• Increase your fitness by doing exercise and improving your diet. The dietician at the pre-liver transplant clinic provides assessment and review. A PAH physiotherapist can help with fitness or you can arrange a private physiotherapist for extra input. General practitioners have information about referral to a physiotherapist through the Chronic Disease Management Program.
• Plan for time away from home and/or work.
• Develop a plan to manage aspects such as bill payment, income support, home and garden maintenance, childcare, pet care, elder care and other care duties for which you might be responsible for.

Make plans for the post- transplant time frame. Plan for discharge from hospital:

• Arrange a transport plan for regular outpatient clinic visits. Patients are unable to drive for at least 4 to 6 weeks after the transplant surgery. Transport options include family and friends, taxi and other commercial rideshare services or community transport, if available. If from a near regional area such as Gold Coast, Sunshine Coast, Bribie Island or Caboolture, Toowoomba, Tweed Heads or Lismore; plan where you wish to stay and make arrangements with your regional hospital patient travel office regarding accommodation and transport subsidies.
• Keep doing whatever works well for you and causes no harm.
• Maintain as much usual and normal day to day activity as possible.
• Get daily rest, eat well and exercise. Keep connected with family and friends. Check that finances are in order. Call the social worker any time for information and planning or referral to relevant support services. Go to Money Smart
• Stay Calm. Ideas include meditation apps and websites, essential scented aroma oils and listening to favourite music, playlist, podcasts or audiobooks. Headphones or earbuds are useful on wards and outpatient areas. Writing a paper or electronic journal can help document how you are. Take control and create a pleasing environment. Atmosphere greatly influences feeling and mood.
• Pack a few clothes and items ready for hospital. Have loose and comfortable clothing ready for day pass and overnight pass from the Transplant Unit. There is a Target store and Vinnies outlet across the road from the hospital if anything is needed.
• Go to Head to Health – an excellent website with many mental health and support resources
• Have a list handy of absolutely everything else you need to collect or do when you get the phone call for the transplant.
• Get legal affairs in order. This is part of Advance Care Planning.

Even though the Queensland Liver Transplant Service achieves excellent results, not everyone on the waiting list will survive to transplant and not everyone who has a transplant will survive. And some patients who do survive, experience a much longer time than most in ICU or a hospital ward. The doctors will discuss the risks and benefits with each patient.