Frequently Asked Questions

Frequently Asked Questions About the Northwestern Medicine Lung Transplant Program

How is my care coordinated between my physician and Northwestern Medicine?

Before your transplant, we co-manage patient care with your primary care or other referring physician. We will involve your physician and tell them about every decision for your care. After your transplant surgery, your referring physician will keep providing care in coordination with the Northwestern Medicine Lung Transplant team.

What do I need to do before my consultation visit?

• You must be nicotine-free for at least six months before your transplant evaluation. We may test you for nicotine or drug use at any time. If you do not complete the nicotine or drug test within 24 hours of our request, we will assume a positive test result.
• Please reach out to your primary care clinician to arrange age-appropriate cancer screening and get up to date on the vaccines you need.
• You must visit the dentist for routine care and complete any necessary dental work. This will help make sure that there is no gum disease or cancer. We need your dentist to provide clearance before we can perform a lung transplant.

What happens during the evaluation period?

At your first clinic visit, you will start learning about lung transplants and determining if it is an option for you. Our team can answer your questions.

During the evaluation period, we will:

• Test your blood and urine.
• Check your nutrition.
• Perform scans, X-rays and lung tests.
• Check how well your heart and esophagus work.

We may perform some of these tests during your first visit. We perform these tests to:

• Identify if you are a candidate for transplant.
• Measure the extent of your lung disease.
• Evaluate any complications of your lung disease.
• Help your care team support your best possible health in anticipation of a lung transplant.

You can stop the evaluation at any time. Completing the evaluation does not mean that you will get a lung transplant.

How long does the evaluation take?

Most evaluations take five days. You will have several physician and clinic visits during this time. Please bring a family member or close friend to these visits to help you take notes and ask questions. We will cover the cost of your parking as part of your care during these visits.

Why do people need a lung transplant?

A lung transplant is often only for people who have tried other medications or treatments, but their conditions keep getting worse.

A lung transplant is a surgery to replace a diseased or failing lung with a healthy lung. The donated lung is from a donor who has died. Depending on your medical condition, a lung transplant may involve replacing one of your lungs or both.

Who will coordinate my care at Northwestern Medicine?

You will have a dedicated nurse coordinator to support you before and after your transplant. They are available 24 hours a day to help coordinate your care during your transplant journey.

What is the lung Composite Allocation Score (CAS)?

The lung CAS was developed to ensure that all people on the transplant waitlist are judged fairly. The score considers:

• How sick a patient is before transplant
• How well they are likely to recover after the transplant

You must be physically and mentally ready for a transplant to be a good candidate. Your lung CAS is based on your clinical information. It includes:

• Lab values
• Test results
• Disease diagnosis

This information is used to calculate a score. Scores range from 1 to 100.

People who have the most urgent need for a transplant have the highest score. They are given first priority when a donor organ becomes available. In other words, generally speaking, the more critical your condition is, the higher on the list you are placed. However, if you are so sick that you may struggle to recover, you may lose points.

How do I get matched with a donated lung?

The United Network for Organ Sharing (UNOS) distributes transplant organs in the United States. This includes many different organs, such as hearts, lungs, kidneys, livers and others.

UNOS uses a national database to distribute organs. The Lung Transplant Team will update your information in the UNOS database as your condition changes.

A lot of information goes into the UNOS database, including your:

• Age
• Sex
• Blood type
• Lung CAS

We will draw blood samples from you every two months while you are on the waitlist. We will use the samples to make sure that your body will not reject your new organ(s) right away. The test between donor tissues and your stored blood sample is called a crossmatch.

UNOS uses all of this information to match you with a possible donor. Organs are offered to patients on the waitlist based on their lung CAS.

UNOS works closely with regional organ procurement organizations (OPOs). They help coordinate the donor and recipient when placing an organ. At the time of transplant, your nurse coordinator will be in contact with the OPO coordinating the donation.

Gift of Hope (GOH) is the OPO in the greater Chicagoland area.

How long will I have to wait for a donor lung?

It is hard to know how long you will wait. On average, candidates wait between six months and three years for a lung transplant. However, as soon as you are placed on the waitlist, you could get your transplant at any time.

The length of time you have been on the waitlist is one of the last factors that GOH considers. They only consider waiting time if there are two or more candidates on the list who have the same lung CAS and negative crossmatches. If this happens, they will offer the donor lung to the candidate with the longest waiting time first.

Your age also affects when you will get a lung transplant. Lungs from children and teenagers are offered to children and teenage candidates first, before they are offered to adults.

How does the donation process work?

The person giving the organs is the donor. The person receiving the new organ(s) is the recipient.

Lung donations always come from donors who experienced brain death, but their heart is still beating and carrying oxygen to the rest of their body. Therefore, the organs stay healthy and surgeons can remove them for transplantation. When someone experiences brain death, there is no chance for them to recover.

The OPO is contacted after a patient is determined to be brain dead. They talk about organ donation with the donor’s family. If the family agrees, a medical team conducts a full medical and social health evaluation to make sure the organs are acceptable.

Tests include a:

• Chest X-ray
• Sputum culture
• Arterial blood gases (ABGs)

The medical team also tests the donor for several diseases and infections, including hepatitis B, hepatitis C, HIV and cancer. If the patient has any of these diseases, they will be considered an increased risk donor. If you are offered lungs from an increased risk donor, our care team will talk with you about the risks and benefits to transplanting these lungs. They will answer any questions you have.

When there is an acceptable donor, the OPO will contact UNOS and match the donor to a recipient on the waitlist.

The recipient is matched to the donor’s:

• Blood type
• Height
• Weight
• Age (if possible)

Organ donation is confidential. That means the Lung Transplant team will not give you any information about your donor.

How long will I be in the hospital?

On average, patients with a single lung transplant are in the hospital for five to 10 days. On average, patients with bilateral (two lungs) lung transplant are in the hospital for two to three weeks.

Who will care for me after I leave the hospital?

You should identify two caregivers, such as family members or friends, who can take turns caring for you at home after your surgery.

You will need someone with you 24 hours a day, 7 days a week for the first three months after you are discharged.

Expect your support people to help you with:

• Transportation: Driving you to and from clinic visits, testing procedures, lung rehabilitation and other places you may need to go.
• Medication assistance: Helping to keep up with your medication schedules, prescription refills and dose changes.
• Home health monitoring: Helping you measure and record your daily weight, blood pressure and spirometry.

To help your support people understand and prepare for caring for you after your transplant, we require that your support people do all of the following:

• Attend at least one of your pre-transplant clinic visit with you.
• Be at our pre-transplant Patient Education Session, which occurs before you are put on the waitlist.
• Review the transplant guide that your care team gives you.
• Know how to contact members of your transplant team

While most patients will have a better quality of life and manage well after transplant, recovery can be hard. Some patients feel depressed and worry about their health. They may feel anxious and even guilty about depending on others for help.

It is important for you to have people in your life who can:

• Help you understand what is happening and what you need to do.
• Share what you are feeling.
• Arrange for any treatment you might need.

Will there be any additional expenses?

Beyond the cost of your transplant surgery, prepare for other expenses related to your care. These may include:

• Follow-up care
• Long-term medications
• Caregiver expenses
• Travel
• Parking
• Lodging