Before, During and After Kidney Transplant: Caregiver Responsibilities

Before Kidney Transplant: Caregiver Responsibilities

There are a lot of steps before kidney transplant. The patient must:

• talk with their doctor about ESRD treatment options, such as dialysis and transplant,
• choose a transplant center,
• receive transplant education
• complete the evaluation process
• and, if approved, be listed for transplant.

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

• transplant nephrologist (kidney doctor),
• transplant surgeon,
• nurse coordinator,
• social worker,
• psychologist,
• psychiatrist,
• dietician,
• pharmacist, and
• financial counselor.

Evaluation includes many appointments and tests to evaluate the patient’s kidneys and general health. The treatment team reviews test results to decide if the patient is eligible for transplant. Transplant centers have different evaluation requirements, and every patient has a different health background.

If the patient is eligible, they are placed on the transplant waitlist. Then they must wait for a kidney donor (living or dead) to be evaluated. Waiting can be frustrating and stressful. As a caregiver, you will support the patient while they wait.

To stay on the transplant waitlist, the patient must:

• continue with regular dialysis,
• be re-evaluated ever year (or more), and
• complete regular lab work.

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 and dialysis centers.
• 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, and
• lower quality of life.

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

• fatigue,
• anxiety, and
• depression.

During Transplant: Caregiver Responsibilities

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

• call the patient and tell them to come to the hospital. 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).

You should come to the hospital with the patient. 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.
• 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.

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.

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, and
• ask questions.
• attend educational sessions about post-transplant care.
• You will learn how to care for the patient at home (wound care, medication management, etc.).

Caregiving for a kidney 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 Transplant: Caregiver Responsibilities

Taking care of a new kidney 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 lab appointments (weekly to start but less often as the patient improves),
• prepare meals,
• change wound dressings,
• complete (or ask for help with) household chores,
• help the patient with daily living and hygiene activities, and
• 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 kidney 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 kidney is working.
• early signs of rejection.
• signs of infection. (Urinary tract infections (UTIs) can damage the kidney if not treated.)
• 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 kidney area can be a sign of rejection.

Hydration

You must help the patient drink enough water to keep the new kidney healthy. Ask the transplant team how much water the patient should be drinking every day.

The patient should drink mostly water. It can be difficult to drink a lot of water. Healthy ways to increase water intake:

• Water infused with:
  • Fruits (strawberries, lime, peaches, lemon)
  • Herbs (mint, basil)
  • Vegetables (cucumbers)
• Sparkling flavored water (no sugar added)
• Plain sparkling water
• Plain decaffeinated coffee or tea (Drink a glass of water for every cup of coffee or tea.)

The patient cannot have drinks with a lot of:

• Caffeine (diet or regular soda) or
• Sugar (juice or punch).

Drinking enough water can be difficult, especially if the patient is used to drinking less water during dialysis. The patient might use the restroom a lot in the beginning, while they re-train their bladder muscles to hold more water. Plan frequent trips to the restroom at night and when you travel.

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 drink enough water

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

Being a kidney 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.