Caregiver Responsibilities

Before Transplant

Evaluation for Listing

First, the transplant team will decide if the patient:

• can survive the transplant surgery.

• will probably do well after the transplant surgery.

• is eligible to be on the transplant list.

The patient must do tests, go to appointments, and follow the treatment team’s health recommendations. Each patient is different, and each organ requires different testing. Learn about common evaluation requirements for each organ by finding your organ's section of the toolkit.

The patient must also identify a caregiver. If the patient identifies you as a caregiver, you must:

• go to appointments with the patient.

• learn about transplant.

• meet with the transplant social worker to talk about caregiver responsibilities.

• help the patient communicate with the transplant team.

• agree to all caregiver responsibilities.

Usually, a patient cannot be on the list for a transplant until they have a caregiver who agrees to all caregiver responsibilities. Some transplant teams require a “Family Meeting”, so everyone who will support the patient learns about organ transplantation and helps create a caregiving plan.

After the evaluation, the transplant team will talk about the patient’s case at a selection committee meeting. They will decide if the patient is eligible for a transplant.

Listed, Waiting for a Transplant

As a caregiver, you will support the patient while they wait for a transplant.

Wait times are different for different organs and at different transplant centers. If a living donation is possible (kidney or liver), the wait is shorter. The transplant team will give more specific information about the wait time for your patient.

Treatment teams can remove patients from the wait list if their health condition improves or they are not eligible anymore. They can also put patients on an inactive list, meaning they will not receive an organ, even if one is available. There are many reasons a patient can be taken off the wait list or put on an inactive list. Help the patient communicate with their transplant team, so you and the patient can work through situations that might stop them from receiving an organ.  

Learn more about specific organ transplant evaluations and listings. Find your organ's section of the toolkit.

During the Transplant Surgery 

When an organ is available, the transplant team will call the patient and tell them what time to be at the hospital for surgery. This can happen any time during the day or night.

As a caregiver, you must make sure the patient gets to the hospital in time for surgery. You should have a transportation plan, so everyone is ready when you get the call. Usually, patients who need a liver, heart, or lung transplant stay in the hospital while they wait for a transplant.

Please remember: Sometimes, patients are called in for surgery, but the surgery is canceled because the organ might not be a good match for the patient. This can be disappointing. The good news is, though, the patient is high on the list, and they might get another call soon.

After surgery, when the patient is recovering in the hospital, you and the patient will have education sessions with people from the transplant team (transplant coordinator, social worker, pharmacist, physical therapist, dietitian, financial/insurance specialist, and other hospital employees).

You will learn how to care for the patient at home, after they discharge from the hospital. The transplant team starts planning for discharge the day the patient is admitted to the hospital. You will participate in discharge planning.

If you live far away from the hospital, you might need to plan on staying close, depending on how recovery goes. If the patient lives out of town, you must make travel or housing plans before discharge. The transplant social worker can help.

Learn more about organ-specific transplant surgery by finding your organ's section of the toolkit.

After Discharge 

After discharge from the hospital, the patient will still be in recovery. You will take care of the patient at home until they improve enough to take care of themselves. You will:

• prepare meals,

• change wound dressings,

• complete (or ask for help with) household chores,

• help the patient with daily living and hygiene activities,

• track blood pressure, blood sugar, temperature, weight, and fluid intake (ask for tracking documents),

• take the patient to follow-up and lab appointments (weekly to start but less often as the patient improves),

• advocate for the patient, and

• help the patient report concerns or symptoms.

Recovery can take time. Talk often with the transplant team to monitor the patient’s recovery. Make a list of all appointments, procedures, and medication changes to help you, the patient, and the transplant team.

Learn more about post-transplant needs for specific organs by finding your organ's section of the toolkit.

Medications

After the transplant surgery, the transplant team will prescribe new medications. If the patient does not take their medication correctly, their body can reject the new organ. This means that their immune system will attack the new organ because their body doesn’t recognize it.

You must:

• help the patient take medication exactly when and how it is prescribed.

• order refills.

• make sure the patient is taking the correct dose (doses change often).

• help the patient organize their medications.

Ask the transplant pharmacist or nurse to help you organize medications before the patient is discharged from the hospital. They might recommend you use a pill box.

Transplant patients must take some medications for the rest of their lives. Some medications have side effects. For example, transplant patients must take steroids, which can impact mood. Other medications can cause delirium or confusion. Ask the transplant pharmacist if you have questions about side effects.