Lung Transplant Patient Education

Lung Testing

• Chest X‑ray
• Pulmonary function tests
• Ventilation/perfusion (V/Q) scan
• Chest CT scan
• 6‑minute walk test
• Home oxygen evaluation

Heart Function Testing

• Electrocardiogram (EKG)
• Echocardiogram
• Cardiac catheterization
• Depending on results, you may need to stay overnight.

Blood and Urine Testing

These tests help us check your blood counts, kidney and liver health, blood sugar levels, infection history, immune system, and more.

They may include:

• Complete blood count
• Complete metabolic panel
• Iron panel
• Cholesterol/lipid profile
• Urinalysis and 24‑hour urine collection
• Blood clotting tests
• Testosterone (for males)
• Hemoglobin A1c (diabetes screening)
• Blood type
• HLA/tissue typing
• HIV test
• Thyroid function
• Viral testing
• Hepatitis testing
• Urine drug screen
• Urine cotinine (nicotine) test
• Autoimmune labs (if needed)
• Sputum culture (if needed)

Other Diagnostic Tests

• CT scan of the abdomen and pelvis
• Upper GI study
• 24‑hour pH impedance and manometry testing
• Sniff test (to check diaphragm movement)
• Gastric emptying study
• DEXA bone density scan (done locally)
• Arterial leg Doppler with ankle‑brachial index (based on age/risk)
• Carotid ultrasound (based on age/risk)
• Women: mammogram and Pap smear (done locally)
• Dental clearance (done locally)
• Dermatology clearance (done locally)
• Colonoscopy for patients over age 40 (done locally)

You will also meet with several specialists:

Surgeon

• Reviews your tests and imaging
• Discusses surgical approach and recovery
• Explains donor lung evaluation, including use of ex‑vivo lung perfusion
• Answers questions for you and your caregiver

Financial Liaison

• Reviews your insurance coverage for transplant surgery, hospital care, medications, and follow‑up care

Pharmacist

• Reviews your medications
• Checks for allergies or problems with medications
• Explains transplant medications and side effects
• Reviews insurance coverage for post‑transplant prescriptions

Social Worker

• Reviews your caregiver support
• Identifies barriers to recovery or housing needs

Psychologist

• Reviews emotional and psychological readiness
• Ensures you and your caregiver understand the transplant process

Cardiologist

• Reviews heart testing and discusses surgical risk

Dietician

• Assesses nutritional status
• Reviews your BMI
• Provides dietary guidance

Anesthesiologist

• Explains anesthesia for surgery and other procedures

You will need to plan for oxygen use during the evaluation:

• Bring enough oxygen tanks for travel to/from the hospital and for use in your hotel room.
• When you arrive at the clinic, we will switch you to clinic oxygen tanks.
• If you’re unsure how much oxygen to bring, talk to your local oxygen supplier.

Your primary caregiver must attend the entire evaluation.

A primary caregiver:

• Is your main support person
• Must be present before, during, and after transplant
• Attends all appointments
• Brings you to the hospital when a donor lung becomes available
• Participates in all education sessions

Once your evaluation and tests are complete, your information will be reviewed by our medical review board. This step is to determine whether you are a lung transplant waiting list candidate or if a medical management treatment track would be more appropriate for you.

This committee includes:

• Lung transplant surgeons
• Lung transplant pulmonologists
• Pharmacists
• Social workers
• Financial specialists
• Psychologists
• Dieticians
• Rehab specialists
• Nurse coordinators

You and your referring pulmonologist will be informed of the committee’s decision.

Possible Committee Decisions

1. Deferred:
The team needs more information before making a final decision.
You will be told:

• What additional tests or steps are needed
• How long you have to complete them

2. Approved:

You are a suitable candidate. Before you are officially listed, you may still need:

• Insurance authorization
• Updated health maintenance (such as cancer screenings)
• Additional testing

The committee will also decide whether to list you for:

• Right lung
• Left lung
• Bilateral (double) lung transplant

Once listed, your placement on the waitlist is based on your Composite Allocation Score (CAS). (Refer to the waitlist section for more information)

3. Denied:

If transplant is not safe or appropriate, you will be given the reason.
With your permission, we can refer you to another transplant center or the transplant team will contact you to discuss alternative treatments that will best suit you and your condition.

Reasons may include:

• Medical contraindications
• Other serious health conditions
• Risks that make transplant unsafe

If you are approved as a lung transplant candidate, you will be placed on the transplant waitlist.

Your Pre‑Transplant Coordinator will be your main point of contact until you receive your transplant. They will:

• Answer your questions
• Help keep all your testing up to date
• Share important updates with the transplant team

Listing Talk Appointment: You and your caregiver will attend a listing talk appointment with your pre‑transplant coordinator. During this visit, your coordinator will explain:

• What to expect while waiting on the transplant list
• What testing is required while you are listed
• How often you will be seen in the clinic
• What happens when a donor becomes available
• What to expect on the day of surgery
• Post‑operative recovery and hospital stay

You may also have:

• Updated testing
• Blood work drawn
• Vaccines given

After this appointment, and once everything is cleared, you will be placed on the transplant list and given your Composite Allocation Score (CAS).

This score includes:

• Your diagnosis
• Oxygen needs
• Pulmonary function tests
• 6‑minute walk test
• Bloodwork
• Heart pressures

You are allowed to be listed at more than one transplant center, but:

• It does not guarantee a shorter wait time
• You must meet the criteria and complete the evaluation process at each center
• Your insurance must approve multiple listings

After you are listed, we will see you in the pre‑transplant clinic every two months. At each visit, we will check whether you need updated testing.

Routine testing includes:

Every visit:

• Bloodwork
• 6‑minute walk test
• Frailty testing

Every 6 months:

• Pulmonary function tests
• 6‑minute walk test
• Blood gas
• Blood work
• CT scan of the chest
• Echocardiogram

Every year:

• Chest X‑ray
• Right heart catheterization

We will also update your Composite Allocation Score (CAS) if your condition changes.

Please keep us updated if ANY of the following information changes:

• Your phone number or address
• Medications
• Prednisone dose
• Any fever or infection
• Hospital or ER visits
• Worsening symptoms
• Increased oxygen needs
• Insurance changes
• Travel plans
• Any blood transfusions
• Changes in caregiver support

Staying Physically Healthy:

While waiting for transplant, it is important to stay as healthy as possible.

We strongly recommend:

• Maintaining a BMI under 30
• Eating a healthy, balanced diet
• Staying active
• Enrolling in a pulmonary rehabilitation program near your home

Nicotine, Alcohol, and Substance Use Requirements: We have zero tolerance for nicotine or substance use.

Patients must be nicotine‑free for at least 6 months, including:

• Cigarettes
• Chewing tobacco
• Nicotine gum
• Nicotine patches
• Vape or e‑cigarettes

We perform random nicotine and drug tests. Any positive result will result in deactivation from the transplant list.

You must also stop all:

• Alcohol
• Narcotics
• Benzodiazepines
• Marijuana products

Wait times vary greatly. Some patients receive a transplant within 24 hours, while others wait several months. This depends on:

• Blood type
• Lung size
• Medical urgency
• Donor availability

Not all donor lungs are usable due to infection or injury.

To avoid missing a transplant offer:

• Keep your phone charged and with you at all times
• Do not screen calls—some donor coordinator calls may come from blocked numbers
• Update us immediately if your phone number changes
• Stay within 6 hours driving distance of Tampa General Hospital
• Have a driver ready at all times

If you cannot be reached within 1 hour, we must offer the lungs to the next candidate.

Staying Mentally and Emotionally Healthy: Waiting for a transplant can be stressful. We encourage you to:

• Attend our monthly virtual support group led by our psychologist
• Share your feelings with others going through the same experience
• Reach out to your coordinator if you feel overwhelmed

We can refer you to mental health professionals for additional support.

Nutrition Before Transplant: Our dietician will thoroughly review your nutritional needs.

We recommend:

• Eating a healthy diet
• Working toward a BMI between 18 and 32
• Eating enough protein to maintain muscle strength
• Managing reflux by:
• Eating early in the evening
• Allowing 3 hours between dinner and bedtime
• Avoiding late‑night snacks
• Sleeping with your head elevated using a wedge pillow

Once you are on the waiting list, please keep a bag packed at all times. A call may come at any hour.

When a donor is identified:

• A donor coordinator will call you
• You will have several hours to drive to Tampa General Hospital
• You will be told when to stop eating and drinking
• Drive safely and wear your seatbelt
• Bring enough oxygen to travel to and from the hospital

What happens next:

• A surgical team will travel to assess the donor lungs
• If the lungs meet criteria, you will be taken to the operating room
• If they do not meet criteria, the surgery will be canceled and you may return home
• This is called a “dry run”

Sometimes lungs need additional evaluation using an ex-vivo lung perfusion (EVLP) pump before being accepted.

Please be sure you have adequate oxygen in case you need to return home.

When You Arrive at Tampa General Hospital and check-in you will be admitted to a hospital room to begin preparing for surgery. Once admitted:

• You will have blood tests, a chest X‑ray, and an EKG
• You will be asked not to eat or drink
• A nurse or provider will complete a detailed history and physical exam
• Your medications and allergies will be reviewed
• You will sign consent forms with the surgical team
• The anesthesia team will also meet with you

The time between arriving at the hospital and going to the operating room can vary. Sometimes it happens quickly, and other times it may take several hours or even overnight.

Understanding Increased Risk Donors: All donors go through thorough testing to check for infections or conditions that could be passed to the recipient. This includes:

• Blood tests
• Cultures
• Chest imaging
• Bronchoscopy

The Center for Disease Control (CDC) identifies a small group of donors as increased risk donors. This may include people with:

• A history of incarceration
• IV drug use
• Prostitution
• High‑risk sexual exposure
• Hemophilia treated with transfusions
• Men who have sex with men

If a donor falls into this category, additional tests (called NAAT tests) are done to check for infections like HIV and hepatitis B/C.

If these tests are negative, the risk of infection is very low.
However, because the donor meets CDC increased‑risk criteria, a transplant team member must call you to discuss this. You may decline the donor if you wish, but this could increase your overall wait time.

If you accept an increased‑risk donor, we will continue to test you for HIV and hepatitis B/C every 3 months for 2 years.

After surgery, you will remain on a ventilator and be taken to the ICU for recovery.

Typical surgery times:

• Single lung: 4–6 hours
• Double lung: 6–8 hours

Like all major surgeries, lung transplant carries risks such as bleeding, stroke, heart attack, kidney/liver problems, and in rare cases, death.

Reperfusion Injury (Early Lung Inflammation): In 10–15% of patients, the new lungs may become inflamed shortly after transplant. This is called reperfusion injury and happens because the lungs are temporarily without blood supply during the transplant.

This may require:

• Extra time on the ventilator
• Temporary support with ECMO (an oxygenation pump that supports breathing)

ECMO support often lasts:

• 3–5 days in most cases
• Sometimes 1–2 weeks if needed

Most patients recover well as the inflammation improves.

Recovery in the Intensive Care Unit (ICU): After surgery, you will be taken to the ICU while still on the breathing machine (ventilator). Your care will be managed by the ICU lung transplant team.

What Happens First

• A bronchoscopy is performed to check the surgical connections in your new lungs and to collect cultures.
• You will receive IV medications to support your blood pressure.
• Once your blood pressure is stable, the team will begin to lighten your sedation so you can slowly wake up.

Pain Control: It’s normal to feel discomfort when waking up. Pain is managed with:

• IV medications
• Cryoablation (nerve-freezing treatment) performed during surgery to reduce pain

Coming Off the Ventilator: The ICU team checks regularly to see if you are ready to breathe on your own. Most patients have the breathing tube removed within 24–48 hours.

After the tube comes out:

• You will start on oxygen
• Oxygen is gradually reduced over the next few days
• When you need less than 4 liters, you can usually be moved out of the ICU

Getting Moving: Once the breathing tube is removed, you will be encouraged to:

• Cough and take deep breaths
• Sit up in a chair
• Walk in the ICU with help

You will work with:

• Physical Therapy (PT)
• Occupational Therapy (OT)
• Pulmonary Rehab

You may also be given stationary pedals to keep your legs moving throughout the day.

Speech Therapy: When you’re stronger, Speech Therapy will assess your swallowing to make sure it is safe for you to eat and drink.

Using the Incentive Spirometer (IS): You will learn how to use the incentive spirometer to help keep your lungs open and clear. You are expected to use the IS 10 times every hour while awake.

Bronchoscopies may also be done to help remove mucus from the airways.

Some patients may need the ventilator for a longer time. About 15–20% of patients are very weak before transplant and may require:

• A tracheostomy (breathing tube in the neck)
• Ventilator support for several weeks

A small number of patients (about 5%) may develop temporary kidney problems and need short‑term dialysis.

Most patients stay in the ICU for about one week.

Recovery on the Transplant Floor: Once your condition improves, you will be moved to the transplant floor.

Chest Tubes: You may still have 2 chest tubes on each side. These are removed one at a time over the next few days.

You are required to participate daily in:

• Physical Therapy
• Occupational Therapy
• Pulmonary Rehab

Before going home, you must be able to walk 1,000 feet on your own.

Most patients stay 2–3 weeks on the transplant floor before being discharged to local housing.

Education Before Discharge:

Before leaving the hospital, you and your caregiver will receive important education, including:

1. Medication Class – taught by the pharmacist
2. Nutrition Education – provided by the dietitian
3. Diabetes Education – if needed
4. Post‑Transplant Education – with the post‑transplant coordinator
5. Pill Box Review – completed by the pharmacist on discharge day

After you leave the hospital, you will be required to attend outpatient pulmonary rehabilitation at TGH twice a week for 12 weeks. This program helps strengthen your lungs and improve your endurance.

• If you do well after the 12‑week program, you will be transitioned to a local pulmonary rehab center closer to home.

Clinic Visits and Monitoring: At first, you will have clinic visits twice a week. You must bring your post-transplant binder and filled pill box with you. These visits typically include:

• Blood work (DO NOT take your immunosuppression medication until after your blood work is drawn)
• Chest X‑rays
• Spirometry (a lung function test)

Your transplant team will adjust your immunosuppression medications during these visits based on your blood levels and how you are healing. As you improve, your clinic visit schedule will be reduced gradually.

Lifelong Immunosuppression: You will take immunosuppression medications for life to prevent your body from rejecting the transplant. These medications weaken your immune system, which means you will be more prone to infections.

You will receive detailed education on how to prevent infections, including:

• Frequent handwashing
• Wearing masks in crowded places
• Avoiding people who are sick
• Keeping your home environment clean

Daily Health Tracking: You will be given a post‑transplant binder to record important daily measurements:

• Blood pressure
• Heart rate
• Temperature
• Weight
• Blood sugar levels (3-4 times daily)- if applicable
• Spirometry readings

Your transplant team reviews this log at each clinic visit. These numbers help guide medication adjustments and monitor for early signs of infection or rejection.

Bronchoscopies After Transplant: at discharge you will receive a bronchoscopy schedule at for bronchoscopies are performed at:

• 6 weeks
• 3 months
• 6 months
• 9 months
• 12 months

During these procedures, the team takes small biopsies from the lung tissue to check for early signs of rejection—even if you feel well. If rejection is found, it is usually treated with a 3‑day course of IV steroids.

Swallowing and Esophageal Testing: Around 3 months after transplant, you will have tests to check for micro aspiration (small amounts of stomach content entering the airway). These studies may include:

• Esophagram
• pH probe testing
• High‑resolution esophageal manometry

This helps identify silent reflux or swallowing issues that might affect your new lungs.