Before Heart Transplant: Caregiver Responsibilities
There are a lot of steps before a heart transplant. This is usually an overwhelming time for patients and caregivers.
To receive a heart transplant, the patient must complete an evaluation with the transplant team. This team can include:
- Transplant cardiologist (heart doctor)
- Transplant surgeon
- Nurse coordinator
- Social worker
- Psychologist
- Psychiatrist
- Pharmacist
- Dietician
- Financial counselor
Evaluation includes many appointments and tests to evaluate the patient’s heart 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.
When they are on the transplant waitlist, the patient might:
- Have frequent clinic visits to monitor weight and blood pressure
- Need frequent Echocardiogram (ECHO) tests. ECHO tests use sound waves (ultrasound) to create a picture of the heart that can show heart disease.
- Need a Right Heart Catheterization (RHC). RHC is when a medical provider puts a catheter (small tube) in the patient’s neck or groin to check pressure and blood flow in the right side of their heart.
- Use a LifeVest (portable external defibrillator) to monitor heart rhythm and deliver a shock to the heart if it detects a dangerous rhythm. If worn correctly, it can save the patient’s life.
- Receive medication called inotropes through their veins (intravenously or IV).
- Be evaluated for a Left Ventricular Assist Device (LVAD), a mechanical pump that pumps blood from the left ventricle of the heart through the rest of the body. A medical provider puts the pump into the patient’s chest, and the pump is connected to a controller and battery pack outside of their body through a small cut in their stomach. LVAD is called a Bridge to Transplant because it helps patients stay alive until transplant.
- Have fluid and sodium restrictions.
- Be on extracorporeal membrane oxygenation (ECMO). ECMO is when a medical provider puts catheters in the patient’s neck, groin, or chest to pump oxygen into their blood. Usually, patients are sedated and on a ventilator. Sometimes, they stay on a ventilator but not sedation, so they can continue physical therapy. If the patient is on ECMO, they will stay in the hospital while they wait for transplant.
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
- Make plans if you and the patient must move closer to the transplant center while on the waiting list. (Ask your center about their requirements)
- make sure the patient takes their medication correctly, including IV inotropes
- Help the patient with medical devices, like LifeVest and LVAD
- Monitor the patient’s fluid and sodium intake
- Visit the patient in the hospital. If they are very sick or on ECMO, they might stay in the hospital to wait for transplant
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
During Heart Transplant: Caregiver Responsibilities
When the transplant team accepts a heart for the patient, they will:
- Tell the patient (if they are already at the hospital)
- 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. Most heart surgeries require blood transfusions
- 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.
Heart transplant surgery can take many hours.
- The surgeon might tell you how long surgery could take. This is an estimate and can change.
- Surgery can take longer for patients who have had an LVAD or other chest surgeries
- The surgeon will remove devices (pacemaker, LVAD) before transplant surgery
- The medical team will update you as often as they can
- After surgery, the patient will go to a recovery room then the Intensive Care Unit (ICU)
- As the patient recovers, they will move from the ICU to a different hospital unit. Patients spend different amounts of time in ICU.
When you see the patient, they will have:
- Tubes in their chest to remove extra fluid from their body. Tubes are removed before discharge.
- Stitches (sutures) in their chest, around the chest tube. Sutures are removed at the 1st follow-up visit.
- Machines monitoring them, so the transplant team can see how well they are recovering
- A breathing tube. Breathing tubes are usually removed 6-24 hours after surgery.
During the Transplant Hospitalization
The patient will probably stay in the hospital for 2 or more weeks after surgery. The patient will be monitored closely by:
- the cardiac transplant team
- the critical care team
- other specialty teams, for “consults” to make sure other organs are adjusting well
- Nephrology (kidney)
- Pulmonology (lungs/breathing)
- Hepatology (liver)
- Psychology or psychiatry (mental health)
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 to learn about post-transplant care:
- Signs of rejection
- Potential activity limitations
- Environment exposure risks to be aware of
- Nutritional needs
- Hygiene
- Signs of infections
- Lifestyle changes
- You will learn how to care for the patient at home (wound care, wound vac, medication management, etc.)
Nurses are a great resource. They know a lot about the patient’s condition and treatment, so ask them questions and learn from them. Their first priority is caring for the patient, so remember to ask if it’s a good time to talk. Make a list of your questions, so you are ready.
While recovering in the hospital, the patient:
- Will start immunosuppressant medications to help their body accept the new heart. They will take these medications at the same time every day.
- Will have heart biopsies to check for signs of rejection (when the body attacks a new organ)
- Might hear a heartbeat in their ears for the first time. They might need to adjust to the sound.
- Might be confused, delirious, forgetful, or even hallucinate. New medications, stress, and recent anesthesia cause these symptoms. Tell the transplant team if you see a big change in the patient.
- Might move to an acute rehabilitation unit (acute rehab) to build strength through physical therapy, before going home. Acute rehab might be in the same hospital or a different facility.
Preparing for Discharge from the Hospital
Some patients discharge, or leave, the hospital and go to a rehab hospital for intensive physical therapy before they can go home.
The inpatient case managers will help you arrange supplies and services the patient needs when they leave the hospital, like:
- A walker
- Tube feeding supplies (if they need liquid nutrients through their veins, because they cannot take food or liquids by mouth)
- Wound Vac (helps a wound heal by decreasing the air pressure around it, also called negative pressure wound therapy)
- Home health services
- Scale to weigh the patient
- Thermometer
- Blood pressure cuff
- Pill box
- Pill cutter
When you are not at the hospital with the patient, use the time to:
- Disinfect and clean the home
- Go grocery shopping so there is enough food and drink when the patient arrives
- learn about transplant food safety with the transplant team and the nutrition providers
- ask the pharmacist about food-drug interactions
Caregiving for a heart 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 Heart Transplant: Caregiver Responsibilities
Taking care of a new heart is a big job.
After discharge from the hospital, the patient will need a lot of help. Ask your transplant center how close you and the patient must stay to the center. If the patient lives far from the center, you might have to make plans to stay close.
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, temperature, and weight
- Take the patient to right heart catheterization (RHC), follow-up, and lab appointments (several a week to start)
- During RHC, providers will take and test tissue from the heart (biopsy)
- If they see signs of rejection, they will increase medication or readmit the patient to the hospital
- Prepare meals
- Change wound dressings
- Complete (or ask for help with) household chore
- Help the patient with daily living and hygiene activities
- Help the patient report concerns or symptoms
- Monitor the patient’s mental health
- Heart transplant patients have more risk for depression, anxiety, PTSD, guilt, and caregiver dependence
- They hear and feel a strong heartbeat which can be a reminder of the donor’s sacrifice.
- Support the patient during cardiac rehabilitation (cardiac rehab), a medical program that helps patients improve heart (cardiovascular) health after, and sometimes before, heart surgery, heart transplant, or LVAD implant. Patients will go several times a week, starting 6 weeks after transplant. Cardiac rehab has 3 equally important parts:
1. Exercise counseling and training
2. Education for heart-healthy living
3. Counseling to reduce everyday stress, because stress is unhealthy for the heart
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
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