Waiting for the transplant

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 with voicemail, full charged and 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 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. 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. 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 arrange with your regional hospital patient travel office regarding accommodation and transport subsidies.
• 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.
• 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.
• Pack a few clothes and items ready for hospital. Have loose and comfortable clothing.
• Go to Medicare Mental Health – an excellent website with many mental health and support resources
• Get legal affairs in order. This is part of Advance Care Planning.