Life on the active list

From the moment you join the active list, you need to be ready to be called into hospital at any time.

Appointments in the Mater lung transplant clinic

• You will have regular appointments at the Mater lung transplant clinic. Bring your medication list and vaccination card to each appointment. If you don’t live in Dublin, you should consider how you’ll fit this into your schedule. The purpose of these appointments is to see if you are still suitable to remain on the active list.
• You will need antibody tests every month, and blood tests every 3 months. Some may be done at the Mater.
• If you are waiting over a year for your transplant, we will need to repeat some of your investigations to make sure we have the most up to date information for you, and to ensure you remain suitable for transplant. You may be able to get these tests done locally.

Local respiratory consultant

It is very important to keep meeting your local respiratory consultant. Although you will be attending the Mater lung transplant clinic regularly, your local respiratory consultant is your main lung doctor up to when you (may) have a transplant. They are experts in managing your specific lung disease and are responsible for adjusting your medications and treatment plan. They will also be aware of and have access to any new medications that may become available to treat your lung disease.

Other healthcare appointments

Keep attending any other healthcare appointments, including:

• Appointments with your GP
• Vaccination appointments
• Appointments with any other specialists (for example, diabetes)
• Appointments with health and social care professionals (for example, dietitians, occupational therapy)
• Pulmonary rehabilitation classes
• Any other supports, classes or events such as Irish Lung Fibrosis Association (ILFA) or Cystic Fibrosis Ireland (CFI)

Regular phone calls

Your transplant coordinator will call you regularly to see how you are getting on. Let your coordinator know:

• If you experience a new health issue (for example, COVID 19)
• If you have needed to be admitted to your local hospital for any reason
• How much oxygen you're using at rest and while walking
• If you have been asked to make changes to your treatment or medications
• If there are any changes to your weight
• If you or your care partners’ phone numbers have changed
• If your address has changed

If you become unwell

If you become unwell, you should go to your nearest doctor or emergency department and inform your coordinator immediately. Don’t wait for your next phone call or clinic appointment to report this. Those calls are only for stable care.

It's important to be aware that if you are really unwell and you don't seek medical treatment, your surgery may be cancelled and you may risk being removed from the active list altogether.

Travel plans

Talk to your local respiratory consultant before planning any travel. Please let the lung transplant team know if you are travelling.

If you travel around Ireland, we will need the address (including eircode) and contact details of where you are staying so we can send the ambulance there and allow for any extra transport time, if necessary.

If you travel abroad you will be temporarily suspended from the list until you return.

It is important to manage your health as best you can so you stay well enough to remain on the active list.

• Stick rigidly to your medications and to the diet and exercise programmes given to you by the Mater and your local team.
• Keep track of your oxygen levels (at rest and with exercise) and report back any changes. Your local respiratory consultant and their team may need to increase your oxygen prescription.
• Reduce your risk of infection. Keep up with the yearly flu vaccine, limit exposure to crowded spaces, wear a mask (particularly in winter) and use alcohol hand gel.
• Try your best to continue living your life as normal. If you are having a tough time or feel you need more support, speak with your local respiratory consultant.
• Continue to attend regular appointments with your local respiratory consultant and ask them to refer you to pulmonary rehabilitation.

To learn more about how to stay healthy, go to Living well while waiting for transplant.

You will be reassessed regularly to make sure you are still well enough for surgery. You may be temporarily or permanently suspended from the list if you:

• have an active infection, like COVID 19
• your weight goes up or down
• have a new diagnosis
• can't walk or maintain your physical fitness

This is to protect you if the surgery has become too risky. All cases are discussed as a team before any decision is made.

While being listed for a lung transplant brings hope, it’s important to be realistic. Not everyone will receive a transplant, and not everyone who does will have the outcome they hope for. That’s why it’s essential to plan ahead.

Being on the transplant list means that your lungs are failing. For some people, this can happen more quickly than expected. Everyone’s journey is different.

It’s important to think about what matters most to you and to talk about this with your family and the transplant team. Having these conversations ensures your wishes are understood and respected. It also gives you the chance to make practical plans and get your affairs in order, on your terms. By planning ahead, you can have peace of mind knowing that you’ve made your preferences known, helping guide your care no matter what lies ahead.

For more information and resources, go to End of life planning.