Before, During, and After a Lung Transplant: Caregiver Responsibilities

Before Lung Transplant: Caregiver Responsibilities

There are a lot of steps before a lung 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 lung transplant, the patient must complete an evaluation with the transplant team. This team can include:

• Lung doctor (pulmonologist)
• Transplant surgeon
• Nurse coordinator
• Social worker
• Psychologist
• Psychiatrist
• Pharmacist
• Dietician
• Financial coordinator

Evaluation includes many appointments and tests to evaluate the patient’s lung 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. 

Before the Transplant: Medical Tests and Terms 

Patients must do many tests during transplant evaluation and while they wait for transplant surgery. 

• Pulmonary function test (PFT) measures how well the lungs work
• Six-minute walk test (6MWT) measures how far a patient can walk in 6 minutes
• Pulse oximeter measures how much oxygen is in the blood (oxygen saturation)
  • If the patient has an electronic device to measure oxygen, you will help them use it
  • Call the transplant nurse coordinator if you have questions

These tests:

• Show changes in how well the lungs work
• Show if a patient needs to be on oxygen (to support breathing)
• May change the patient’s position on the waitlist

Most patients need supplemental oxygen. 

• Work with the transplant nurse coordinator and social worker to help the patient 
• Be prepared for an emergency (if the patient needs oxygen immediately). Know the: 
  • oxygen company’s name and phone number
  • patient’s prescription and requirements
• Help the patient use the oxygen correctly
• Tell the transplant team about the patient’s oxygen requirements
  • Watch for changes in the patient’s oxygen requirements
  • Patients usually require more oxygen the longer they wait for transplant
• Make sure the patient has enough oxygen tanks when traveling. Always plan ahead.

Some patients need Extracorporeal Membrane Oxygenation (ECMO). 

• Catheters (small tubes) in a patient’s neck, groin, or chest pump oxygen into their blood.
• To put the catheters in, patients are sedated and on a ventilator
• When the catheters are in place, sedation usually stops, so patients can do physical therapy
• Patients on ECMO stay in the hospital
• Visit the patient as much as you can

Tobacco

You and the lung transplant patient must stop using all smoking products, including:

• Cigarettes
• Cigars
• Vapes
• E-cigarettes
• Hookahs
• Cannabis in smoked form

The patient will have drug tests during the transplant evaluation.

• The patient can be removed from the transplant waitlist if they show any amount of:
  • Nicotine
  • Tobacco
  • Illegal drugs (even from secondhand smoke)
• Drug tests can detect secondhand smoke
  • If family or friends smoke near the patient, they might not be eligible for transplant

Ask your doctor for help quitting. There are many resources that can help. 

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)
• Visit the patient in the hospital. If they are very sick or on ECMO, they might stay in the hospital to wait for transplant
• Help the patient with their daily nebulizer treatments, breathing treatments, and physical exercise
  • Completing the daily treatments shows the transplant team the patient can take care of their new lung after 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 Lung Transplant: Caregiver Responsibilities

When the transplant team accepts lungs 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.
• Will be on a ventilator. A tube that goes down their throat connects to a machine to help them breathe.
• Might be connected to a machine that helps circulate blood during the 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.   

A lung transplant 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.
• During surgery, The surgeons will:
  • Make a cut in the patient’s chest.
  • Remove the damaged lung.
  • Put the new lung in the patient’s chest.
  • Attach the patient’s blood vessels and airway to the new lung. 
  • Close the chest with stitches or staples.
  • Put a bandage over the cut. 
  • Put tubes in the patient’s chest so extra air and fluids can leave their body. 
• 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 after surgery, they might be asleep. 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 1^st 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 at least several weeks after surgery. The patient will be monitored closely by:

• The lung transplant team
• The critical care team
• Other specialty teams, for “consults” to make sure other organs are adjusting well
  • Nephrology (kidney)
  • Cardiology (heart)
  • 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 medical 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 lung(s). They will take these medications at the same time every day.
• 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. 

While the patient is in the hospital:

• Put the patient’s oxygen company on hold
• Do not cancel the oxygen
• The transplant team will tell you if the patient needs oxygen after transplant (or if you can cancel it)

Before and after transplant surgery, the patient might have the following procedures:

• Bronchoscopy: When a medical provider puts an endoscope (a thin tube with a camera) through a patient’s nose or mouth to see their lungs
• Ventilator: A machine that helps a patient breathe. A tube is put down the patient’s throat and then hooked to a machine that will help them breathe
• Tracheostomy: When a provider cuts a small hole in the patient’s neck and puts a tube through the hole into the windpipe (trachea). Tracheostomy helps patients breathe temporarily so the:
  • Ventilator tube can be removed (after 7 days on a ventilator) to stop pressure on the trachea
  • Lungs get back to their normal working strength
  • Patient can slowly stop taking sedatives
  • Patient can participate in physical therapy

You will learn how to take care of the “trach.”

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 manager will help you arrange supplies and services the patient needs at home, like: 

• A walker
• A tracheostomy and related supplies
• A feeding tube and nutrition supplies
• Suction machine
• Home health
• Compound medications for a nebulizer
• Scale to track the patient’s weight
• Thermometer
• Spirometer
• Blood pressure cuff
• Pill box
• Shower chair and handheld shower attachment
• Glucometer to test for blood sugar levels

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 lung 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 Lung Transplant: Caregiver Responsibilities

Taking care of a new lung 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 (usually 3-4 months). You will:

• Learn about the patient’s new medications (dosage, mixing, specific instructions, side effects).
  • Help the patient take their medications exactly as prescribed
  • Mix specific medications
  • Use a pill box to help the patient organize their medication
  • Look for side effects (hand tremors, shakiness, etc.)
  • Understand what medications interact with other medications or with food
• Track blood pressure, blood sugar, temperature, weight, and spirometry readings at the same time every day
  • Steroids might affect the patient’s mood, blood sugar, and appetite
  • A spirometer measures how much they breath in and out
  • Pay attention to detail
  • Tell the transplant team if there are changes, especially in spirometer readings
  • Changes to vital signs can be a sign of a complication
• Change wound dressings
• 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
• Take the patient to frequent bronchoscopy, follow-up, and lab appointments (several times a week to start)
  • Bronchoscopies often require sedation, so the patient cannot drive.
  • Appointments decrease as they patient improves. 
• Help the patient with pulmonary rehabilitation, a medical program that teaches patients about lung disease and how to exercise their lungs
  • Many patients start before transplant
  • Patients can restart when the transplant team approves it
  • Patients learn to exercise with less shortness of breath
  • They become stronger and more active and usually feel better
  • Classes are done in a group, usually 3 times per week
  • Patients receive support from peers in the classes
  • The financial coordinator will help you learn about insurance coverage for pulmonary rehab
• Bronchoscopies often require sedation, so the patient cannot drive
• Appointments decrease as they patient improves

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.

Lifestyle Changes after Transplant

After transplant, the patient must change parts of their lifestyle.

They might have to avoid:

• Fresh flowers and plants when inside
• Swimming
• Gardening
• Raw or undercooked food
  • Learn about food safety
  • Buy a meat thermometer
• Anything that can irritate or hurt the new lung
• Having certain kinds of pets in the home, such as birds

They might have to start:

• Washing raw vegetables carefully
• Wearing a mask in public (the first few months after transplant)
• Wear a mask on an airplane or during flu season

The patient must adjust to life after transplant. They might:

• Struggle with not using supplemental oxygen
  • An oximeter will help monitor their oxygen levels
  • It can be hard to learn to breathe with a new lung
  • Some patients react emotionally to leaving home without oxygen. Tell the medical team if you see this
• Need more immunosuppressant medications than other organ transplant patients
• Worry their body will reject the transplanted lung
  • Help watch for signs of rejection
• See slow improvements in quality of life
• Struggle longer than they expected with mental and physical recovery from surgery
• Struggle to adjust to a more “normal and healthy” life
• Feel:
  • Depression
  • Anxiety
  • PTSD
  • Survivor’s guilt
  • Caregiver dependence

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 the 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 lung 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
• Tell the transplant team if you are struggling with your caregiver responsibilities
• Have a backup caregiver so you can have respite (a break)
  • Many centers require at least one backup caregiver
  • Make sure the backup caregiver is prepared and understands caregiving responsibilities