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. Your physician will be involved and informed about every decision regarding your care. Following surgery, the referring physician will continue to provide ongoing care in coordination with the transplant team.

What do I need to do before my evaluation appointment?

• You must be nicotine-free for at least six months before starting your transplant evaluation. We may test you for nicotine or drug use at any time. If you fail to have the nicotine or drug test done within 24 hours of the request, we will assume a positive test result.
• Prior to your meeting with the lung transplant team, please reach out to your primary care provider to arrange age-appropriate cancer screening and get up to date on which vaccines you need.
• Visit the dentist for routine care and complete any necessary dental work.

What happens at the evaluation appointment?

• Your first clinic appointment starts the process of learning about lung transplant and determining if it is an option for you. We may start some testing on this first visit, including drawing blood and getting a CT scan of your chest.
• Evaluation tests are done to:
• Identify if you are a candidate for transplant
• Measure the extent of your lung disease
• Evaluate the complications of your lung disease
• Help your care team optimize your health in anticipation of a lung transplant
• The evaluation will include blood and urine tests along with a nutrition check. There will be scans and X-rays along with lung tests. We will also check the function of your heart and esophagus. You have the right at any time to stop the evaluation. Likewise, completing the evaluation does not guarantee you will receive a 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. The cost of parking will be covered as part of your care during these visits.

What are the options for transplantation?

• A lung transplant is a surgical procedure to replace a diseased or failing lung with a healthy lung, usually from a deceased donor. A lung transplant is reserved for people who have tried other medications or treatments, but their conditions continue to deteriorate.
• Depending on your medical condition, a lung transplant may involve replacing one of your lungs or both of them.

Who will coordinate my care at Northwestern Medicine?

A nurse coordinators is available 24 hours a day to help coordinate your care at Northwestern Medicine.

What if I need two donated lungs?

Based on your transplant evaluation, your pulmonologist (lung specialist) and transplant surgeon will decide whether or not you should receive one or two lungs. Some patients can be listed for both single and double lung transplant. Then, the decision will be made at the time of the lung offer. This will be discussed with you prior to being placed on the transplant waitlist.

What is Lung Allocation Score (LAS)?

• The LAS was developed to ensure that all people on the transplant waitlist are judged fairly. It considers the net benefit of the patients listed. It looks at:
• 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. The LAS is based on clinical information about the transplant candidate and includes:
• Lab values
• Test results
• Disease diagnosis

These results are used to calculate a score ranging from 1 to 100. Those 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) is responsible for transplant organ distribution in the United States. This includes many different organs, including hearts, lungs, kidneys, livers and more.

UNOS uses a national database for organ distribution. The transplant team at Northwestern Memorial Hospital will update your information in the UNOS database as your condition changes. A lot of information goes into UNOS, including your:

• Age
• Sex
• Blood type
• Lung allocation score (LAS)

You will have blood samples drawn every two months while you are on the waitlist. These stored blood samples are used 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. The crossmatch must be negative for the lungs to be offered to you.

UNOS uses all of this information to match you with a possible donor. Organs are offered to patients on the waitlist based on their LAS and time on the waitlist. In each blood group, the patient who will be called first has:

• The highest LAS
• A negative crossmatch
• Been on the list the longest

UNOS works closely with regional Organ Procurement Organizations (OPOs). OPOs 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 for your transplant once you are listed. On average, candidates wait between 6 months and 3 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 to be considered by GOH. The only instance where waiting time will be considered is if there are two or more candidates on the list who have the same LAS and negative crossmatches. If this happens, the candidate with the longest waiting time will receive the lung offer first.

Age also plays a role in when you will receive 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 known as the donor. The person receiving the new organ(s) is the recipient.

Lung donations always come from deceased donors who have had a fatal injury to the head (brain death), but their heart is still beating and carrying oxygen to the rest of the body. Therefore, the organs remain healthy and can be removed for transplantation.

Once a patient is determined to be brain dead, the OPO is contacted. They, in turn, discuss organ donation with the donor family. If the family agrees, a full medical and social health evaluation is done to make sure the organs are acceptable. Tests include a:

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

The donor is also tested 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. The risks and benefits to transplanting these lungs will be discussed with you at the time of the transplant.

If the patient is an acceptable donor, the OPO will contact the 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 transplant team at Northwestern Memorial Hospital will never provide you with 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 two weeks. Patients with bilateral (two lungs) lung transplant are in the hospital for three weeks.

Who will take care my health needs after I leave the hospital?

• We should have two support people who will be able to 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.
• Your support people can expect to help you with:
• Transportation: Driving you to and from clinic appointments, testing procedures, pulmonary rehabilitation and other places you may need to go.
• Medication assistance: Helping to keep up with your medication schedules, prescription refills and changes in dosing.
• Home health monitoring: Helping you measure and record your daily weight, blood pressure and spirometry.

We ask that your support people:

• Attend at least one of your pre-transplant clinic appointments with you
• Be present at our pre-transplant Patient Education Session, which occurs before a patient is placed on the waitlist
• Review the contents of the transplant guide given to you by your care team
• Know how to contact members of your transplant team

While most patients will have a better quality of life and manage well after transplant, the journey to recovery can be difficult. 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 to have support systems at home and people 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 involved?

Beyond the direct cost of your transplant surgery, you should be prepared for other expenses related to your care, including:

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