Before, During, and After Liver Transplant: Caregiver Responsibilities

Before Liver Transplant: Caregiver Responsibilities

There are a lot of steps before a liver transplant. This is usually an overwhelming time for patients and caregivers. 

The patient must:

• Choose a transplant center
• Receive transplant education
• Complete the evaluation process
• And, if approved, be listed for transplant

To receive a liver transplant, the patient must complete an evaluation with the transplant team. This team can include:

• Liver doctor (hepatologist)
• Transplant surgeon
• Nurse coordinator
• Social worker
• Psychologist
• Psychiatrist
• Pharmacist
• Dietician
• Financial coordinator

Evaluation includes many appointments and tests to evaluate the patient’s liver and general health. The treatment team reviews test results to decide if the patient is eligible for transplant. If the patient is eligible, they are placed on the transplant waitlist. 

While waiting for transplant, patients have frequent appointments (hepatologist, hospital, transplant center) to manage symptoms of End Stage Liver Disease. 

Patients with cirrhosis also must be monitored for Hepatic Encephalopathy (HE). HE is when a damaged liver cannot remove toxins from the body. The toxins damage the patient’s brain and cause mental and physical symptoms like:

• Forgetfulness
• Mild confusion (not knowing who or where they are)
• Slowed thinking and processing
• Poor judgement
• Feeling on edge or overly excitable
• Disorientation
• Changes to behavior or personality
• Changes to sleep pattern (staying awake at night and sleeping during the day)
• Musty or sweet odor on breath
• Loss of small hand movements
• Shaking of hands or arms
• Slurred speech
• Slowed or sluggish movement

Symptoms depend on how damaged the patient’s liver is and how well it removes toxins from the body. If the patient shows symptoms of HE, contact your hepatologist or transplant center immediately. 

Often, we can stop or control HE with medication that increases bowel movements (to remove toxins from the body). Sometimes, patients must be hospitalized to manage ammonia levels in their body.

While the patient is waiting for a liver transplant, neither of you can drink alcohol. The transplant center may give random drug tests to make sure you and the patient are sober.

Supporting the Patient

As a caregiver, you can help the patient navigate this overwhelming process. You can:

• Learn about the patient’s diagnosis (there are many reasons they may need a transplant)
• Go to the evaluation and follow-up appointments with the patient
• Take notes and ask questions during the evaluation and follow-up appointments
• Pack lunches and snacks to get through the full day of evaluation appointments 
• Help the patient follow recommendations from the transplant team
• Work with the transplant team’s financial counselor and social worker to make sure the patient has insurance for treatment and access to medication
• Help the patient follow good health habits
• Listen to the patient
• Offer comfort and encouragement to the patient

The waiting period before transplant can be stressful. Ask the transplant social worker for support. While waiting for transplant, many patients experience:

• Worsening health
• Anxiety
• Depression
• Panic
• Lower quality of life

As a caregiver, you must take care of yourself during this time. You might feel: 

• Fatigue
• Anxiety
• Depression.

Special Caregiving Considerations for Patients with AAH

Many caregivers struggle with: 

• seeing the patient quickly become very sick and hospitalized often
• accepting the patient’s alcohol use
• learning about liver transplant and care during recovery

As a caregiver, you might feel: 

• shame or guilt, because AAH was caused by alcohol
• self-blame or anger for not recognizing the “signs” of alcohol abuse
• depressed and burdened by caring for a patient with alcohol abuse
• angry with the patient
• stigmatized or judged
• irritable or sad because of changes in the patient’s personality
• resentful for having to change your lifestyle. You must remove all alcohol from the patient’s home. Usually, you must stop drinking alcohol when you are a caregiver

Remember to care for yourself if you experience these emotions.

• Ask for help and accept it when offered
• Share responsibilities with friends and family
• Consider getting support for yourself:
  • therapy
  • Al-Anon (support group if you have a loved one with alcoholism)
  • support groups for caregivers
• Take breaks

During the Transplant: Caregiver Responsibilities

When the transplant team accepts a liver for the patient, they will:

• Tell the patient (if they are already at the hospital). Some patients with severe liver disease may already be in the hospital. The transplant team will tell them a liver is available and call their caregiver or family. 
• Call the patient and tell them to come to the hospital (if they are at home). This can happen any time during the day or night. The team will call you if they need help contacting the patient.
• Not give information about the donor to the patient, caregivers, or family (due to federal law). 

When the patient is admitted to the hospital they will: 

• Have blood tests
• Not be able to eat or drink before surgery (NPO, or nothing by mouth)
• Meet with the intake nurse
• Sign consents before starting surgical preparation
• Have an X-Ray
• Go to different places in the hospital for testing and surgery preparation. Staff will update you as they can
• Receive anesthesia 1-1.5 hours before surgery. They will not be awake during the surgery or feel any pain
• Receive a breathing tube. Intubation is a normal part of surgery

Important! Sometimes, transplant surgery is canceled because the organ might not be a good match for the patient. This is disappointing, but it means the patient is at the top of the waitlist. They might get another call soon.   

Liver surgery can take many hours. 

• The surgeon might tell you how long surgery could take. This is an estimate and can change.
• The medical team will update you as often as they can
• The surgeon will talk with you after surgery, while the patient is in the Intensive Care Unit (ICU)
• You might wait several hours to see the patient, even after surgery. It’s a good time to rest and eat. Give your phone number to the nurse, so they can call you if needed.

When you see the patient, be prepared. They might be confused or disoriented. They might have:

• A large IV catheter in the side of their neck
• An IV in their arm
• A breathing tube
• Tubes in their belly (removed the first week after surgery)

After surgery you will support the patient. Many different providers will go in the patient’s room throughout the day. You should spend most of the day at the hospital, so you can:

• Meet the providers
• Learn about the different teams
• Know the patient’s daily schedule
• Hear all the updates
• Ask questions
• Attend educational sessions about post-transplant care
• You will learn how to care for the patient at home (wound care, medication management, how to monitor for infection, etc.)

Caregiving for a liver transplant patient is a big job. You must also take care of yourself. 

• Go home and rest. Do not sleep at the hospital
• Trust the hospital staff to care for your patient and call you with any needs
• Talk to the transplant social worker if you are feeling overwhelmed
• Talk about how you are feeling
• Ask for help. Don’t try to do everything alone.

After Liver Transplant: Caregiver Responsibilities

Taking care of a new liver is a big job.

After discharge from the hospital, the patient will need a lot of help. You will take care of the patient at home until they improve enough to take care of themselves. You will:

• Learn about the new medication the patient must take (use, dosage, and side effects)
  • Help the patient take their medications exactly as prescribed
  • Use a pill box to help the patient organize their medication
  • Look for side effects (hand tremors, shakiness, etc.)
• Track blood pressure, blood sugar, temperature, weight, and fluid intake (ask for tracking documents)
• Take the patient to clinic and lab appointments
  • Appointments are weekly to start, to make sure immunosuppression medication is working
  • Ask your treatment center when the patient can drive again after surgery
• Care for the patient’s wound
  • Staples will stay in for several weeks after surgery
  • Help the patient clean the incision with antibacterial soap
  • If needed, a home health nurse might be able to help
• Prepare meals
• Complete (or ask for help with) household chores
• Help the patient with daily living and hygiene activities
• Help the patient report concerns or symptoms
• Monitor the patient’s mental health

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. 

Post-Transplant Medications

After surgery, the transplant team will prescribe many medications. Some will have very specific instructions. For example:

• Some immunosuppressant medication must be taken 12 hours apart
• Other medication cannot be taken before laboratory blood draws

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. Rejection is most common for transplant patients who miss medications. 

As a caregiver, you must:

• Help the patient take medication exactly when and how it is prescribed
• Order refills
• Make sure the patient takes 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.

Lab and Clinic Appointments

You will help the patient go to all lab and clinic appointments to monitor: 

• The patient’s general health
• How the new organ is working
• Early signs of rejection
• Signs of infection
• How the patient’s body is handling anti-rejection medication
• Talk about any changes the patient should make
• Pain. Tell the transplant team immediately if the patient has pain. Pain over the incision area can be a sign of rejection

Other caregiver responsibilities

For the first 4-6 weeks (at least), you will need to:

• Drive the patient to their clinic appointments
• Prepare meals
• Lift anything 10 pounds or more
• Help the patient with other lifestyle changes needed to take care of their new organ     

Call the transplant center immediately if the patient has a fever or acts out of character.

Being a heart transplant caregiver is rewarding and challenging. You must take care of yourself.

• Remember to ask for help, to avoid caregiver burnout
• Attend support groups for caregivers
• Remember to take care of your own health
• Go to your scheduled medical appointments
• Don’t stop taking your prescription medicine