Waiting for transplant in hospital

Sometimes a patient’s lung disease worsens and their oxygen needs reach the highest level that can be safely provided at home. In this situation, the transplant team may recommend that you are admitted to the Mater Hospital or your local hospital to wait for suitable donor lung(s) to come available. If this happens, you may need to stay in hospital for weeks or even months. Unfortunately, there is no guarantee that suitable donor lung(s) will become available in time. This means that some patients may die in hospital, or need to come off the active list if they become too unwell to safely undergo the operation.

Not everyone is suitable to wait in hospital for transplant. The transplant team will discuss with you whether this is an option for your individual situation.

Your care

If you’re admitted to hospital, a team of healthcare professionals will be there to support you. This team may include doctors, nurses, physiotherapists, dietitians, social workers, psychologists, and the palliative care team. They will work with you to manage symptoms, maintain your strength and fitness as much as possible, and support your overall wellbeing while you wait for transplant.

The palliative care team can help manage symptoms such as breathlessness and provide additional support for you and your family. They may also discuss death and dying, and what you would want your end of life care to look like if lung transplant was no longer an option.

Treatments

If you are waiting in the Mater for a lung transplant, you will continue to receive all appropriate medical care including scans, blood tests, medications, oxygen therapy, and other treatments to help manage your condition.

However, patients cannot be supported with ECMO or a ventilator in ICU (also called ‘life support’) while waiting for a lung transplant. Relying on these treatments can lead to rapid decline in a patient’s overall health, making transplant unlikely. Our goal is to offer transplant at a stage where it provides the greatest possible benefit and best chance of recovery. If you end up needing this level of support, the team will not offer resuscitation or life support. At that stage, transplant would no longer be safe and the outcome would be poor.

While waiting in hospital, patients need to maintain a certain level of physical fitness. For example, you may be asked to walk a certain distance or take part in physiotherapy. This helps show that you are strong enough to undergo transplant surgery and recover afterwards.

If your oxygen needs become too high, or if you become too unwell to exercise, it may mean that a lung transplant would no longer be safe or successful. In these situations, the transplant team may need to make the difficult decision to remove you from the active list. These decisions are never made lightly.

If you become too unwell, the team will speak with you and your family. The focus of care will shift to comfort, quality of life and ongoing support.

If you come off the list and would like to go home, the transplant team will work closely with your local respiratory consultant and healthcare team, with support from local palliative care services, if needed. However, sometimes a patient’s oxygen needs and care requirements may become so high that it’s no longer possible for them to safely return home, even if they come off the active list. In this situation, end of life care would continue in hospital.

Waiting in hospital for a lung transplant is always a choice. Some people decide to come off the active list and focus on quality of life and time at home with their family. Your transplant team will support you in whatever decision feels right for you.