​​​​​​​​How do I get referred to the Liver Transplant Program?

A liver specialist (hepatologist or gastroenterologist) can refer you to the Liver Transplant Program.

What will happen after my referral has been reviewed?

The transplant team will look over the information in your referral. Once they have reviewed it, a member of the team will contact you to talk about what happens next.

You will either move on to the assessment phase of the process, or your referral will be declined. Every case and experience is different.

What happens in the assessment (work-up) phase for my liver transplant?

The purpose of the assessment phase, also called the work-up or evaluation phase, is to help the transplant team determine if a transplant is the best option for you.

During your assessment, you will get several tests, including x-rays, ultrasounds, and lab tests. You may also be referred for additional testing or meetings with other healthcare providers.

Your assessment may take weeks to months to complete. The timing of your appointments will depend on your current health situation, your needs, and your commitment to getting your tests completed.

During your assessment, you will have a clinic visit with one of the transplant program’s surgeons. You may speak with other members of the transplant team including doctors, nurses, social workers, dietitians, psychologists, physiotherapists, and administrative staff. You will be assigned a liver transplant coordinator at this time, who will let you know about next steps.

The transplant team will not make any decisions about placing you on the transplant waitlist until after they have received all of your information and they’ve had a chance to meet and discuss your case. Your transplant coordinator will let you know whether or not a liver transplant is an option for you.

What else do I need to do during the assessment phase?

• Contact your local public health centre or get a referral to the Communicable Disease Unit to make sure your immunizations are up to date. Some immunizations cannot be done after transplant.
• Make an appointment to see your dentist to check for any infections or cancer.
• See your family doctor or primary care provider to make sure that you have completed any necessary routine cancer screening. This includes recommended routine screening for prostate, breast, colorectal, ​and cervical cancer.

Should I have a support person during my liver transplant?

Yes. In fact, you must have a support person throughout your transplant journey. A support person can be anyone you choose. You can choose more than 1 person to share this responsibility. Your support person should be able to help you during all phases of the transplant: assessment, waitlist, surgery, recovery, and follow-up.

You could choose someone like your partner, a family member, or a good friend. Choose someone who knows you well and is willing to make the commitment.

If you live outside of the Edmonton area, you and your support person should be prepared to stay in Edmonton for 3 months after your transplant.

Your support person will need to:

• give their names and phone numbers to the liver transplant team
• encourage you
• listen to your concerns
• help you with taking your medicines
• go to appointments with you
• be there to help you during your recovery

What can I expect while on the transplant waitlist?

Your transplant team will decide about placing you on the waitlist after they have received and discussed all of your assessment information. Your case will be reviewed by the entire transplant team. If they feel a transplant is your best treatment option, and you agree, you will be placed on the transplant waitlist.

How long you wait on the waitlist depends on factors like your blood type, body size, and how sick you are (blood tests tell the transplant team how well your liver is working).

Learn more about being on the transplant waitlist (video).

Make sure the Liver Transplant Program can contact you at any time while you are on the waitlist. When an organ becomes available, they will need to reach you right away. The program needs to be able to contact you 24 hours a day. If you do not answer your phone, you may miss your chance for a transplant. A mobile device (cellphone or smartphone) is the best way for the program to reach you.

• Carry your mobile device with you at all times.
• Make sure that your voicemail is set up.
• Save important phone numbers to your mobile device, like the Liver Transplant Program, your insurance provider, and your support person.
• If you have caller ID, calls from hospital phone numbers may show as an unknown number. Make sure you answer these calls and don’t block these numbers on your phone.
• Talk to your transplant team if you don’t have a mobile device.

You will need to keep a bag packed and ready for your trip to the hospital.

• Pack your healthcare card, picture ID, medicines, and comfort items like a bathrobe, slippers, toothbrush, toothpaste, and comb or brush.
• Do not bring any jewelry or valuables to the hospital with you.
• Your support person can keep a small amount of money in case you need it while you are at the hospital.
• Depending on how you are getting to the hospital, you may need to bring money to cover transportation costs.

• If you live outside of Edmonton, you will need to make your own arrangements for transportation and accommodations. Try to make these plans before you get called for a transplant.
• Arrange for someone to get your mail, pay your bills, take care of your pets, and take care of your children while you are away.​
  
• Continue routine visits with your family doctor and any specialists. These doctors will continue to care for you while you are on the waitlist. You are responsible for making these appointments. Continue to have your lab work done as instructed by your healthcare providers.
• You will be seen regularly in the liver transplant clinic.
• Contact your transplant coordinator to let them know about any changes in your health, including new infections, new medicines, new illness, admissions to a hospital, or if you have received blood products.
• Tell the transplant team if you are planning a vacation, especially if you are leaving the province.
• Stay healthy, eat well, exercise, and get plenty of rest. The transplant team’s dietitian and physiotherapist can help you with your diet and exercise. Eating well is important to having the best transplant outcome. Learn more about eating well with cirrhosis and use the resources at The Wellness Toolbox and Cirrhosis Care to learn about living well with cirrhosis.
• There may be times when you are placed on hold while on the waitlist. Your transplant coordinator will talk to you if this needs to happen.
• Waiting for a transplant is difficult. Your transplant team is here to support you and work together towards the goal of transplant. Stay positive!

What happens when I get the call for my liver transplant?

There is a limited amount of time during which the liver can be transplanted. If the transplant team cannot reach you, or if you are not ready, willing, or able to accept the new liver, they may offer the liver to the next person on the waitlist. The transplant team does not know how long it will be until another liver may be available.

Learn what you need to know about receiving the call for a transplant (video).

Health Canada has strict rules around transplants. The transplant team will only offer you a liver if it is suitable for you.

When you get the call for a liver transplant:

• Keep your mobile device with you and keep your phone line free. The transplant team may need to call you again. Call your support person and have them make any other phone calls for you so that your phone line stays open.
• The transplant team will talk to you about transportation, how far away you live, and the timing of the transplant. Tell the transplant team if there will be any delays in you getting to the hospital.
• Follow the transplant team’s instructions on when to stop eating and drinking.

Where do I go to get my liver transplant?

Liver transplants are done in Edmonton, at the University of Alberta Hospital. When you get to the University of Alberta Hospital, go to the admitting department, unless you are given other instructions.

Is there a reason my transplant may be cancelled?

In some cases, after you arrive at the hospital, the transplant team might decide that doing the transplant is not safe or not in your best interest. This is called a “dry run.”

If the transplant is cancelled because there is a problem with the liver, you will stay on the waitlist and wait for another organ. If the transplant is cancelled because you have a health issue, the transplant team will need to make sure it is safe to put you back on the waitlist.

What is exceptional distribution?

There are strict rules for assessing and testing donor organs that can be used for transplant. This screening and testing is a lot like what happens when people donate blood.

Transplants are regulated by Health Canada. Organs that do not meet all of Health Canada’s safety rules may be accepted for transplant and offered to you under what is called exceptional distribution.

Learn more about exceptional distribution (video).

Some examples of releasing an organ under exceptional distribution include:

• The donor has a disease that may be passed on to you, such as cancer or an infection.
• The donor has travelled to a place where there is a known disease risk.
• Important questions about the donor’s history cannot be answered.

Organs offered under exceptional distribution may carry other risks or unknown risks to the person receiving it. These organs could, for example, have a higher risk of spreading a disease or infection to you. But the risk usually does not affect how well the organ works.

When organs are released under exceptional distribution, transplant doctors consider everything very carefully. They have decided that there are more benefits to using the organs than there are risks. Otherwise, the organ would not be offered to you.

When you’re offered an organ for transplant, you will be told if it is being released under exceptional distribution. You decide if you want to move forward with the transplant.

If you do accept an exceptional distribution organ, your transplant team will watch you closely to make sure that you’re safe.

If you decide not to accept the exceptional distribution organ, you will not lose your place on the waitlist, but you will have to wait for another organ. This increases your chances of getting sicker or dying while waiting for a transplant.

It’s best to think about your exceptional distribution decision before you’re offered an organ, and not wait until you get the offer.

Talk to your transplant team if you have any questions or concerns about the risks of accepting an exceptional distribution organ.

What is an increased risk donor?

An increased risk donor is a donor who may have a higher chance of infections, including HIV, hepatitis C virus, and hepatitis B virus.

Health Canada has rules for assessing and testing these donor organs. These donors have additional special tests completed to check for these infections. Even when these test results are negative, there is a chance that the donor could have picked up one of these infections in the 7 days before testing, as it may be too early to show up in the results.

For the person getting the transplant, there may be some risk of getting an infection from an increased risk donor organ. Overall, the risk is low. You have a higher risk of dying in a car accident than getting an infection from an increased risk donor organ.

When you are offered an increased risk donor organ, transplant doctors consider everything very carefully. They have decided that there are more benefits to using the organ for your transplant than there are risks. Otherwise, the organ would not be offered to you.

When you are offered an organ for transplant, you will be told if your donor is an increased risk donor. You decide if you want to move forward with the transplant.

If you decide not to accept the increased risk donor organ, you will not lose your place on the waitlist, but you will have to wait for another organ. This raises your chances of getting sicker or dying while waiting for a transplant.

If you do accept an increased risk donor organ, your transplant team will watch you closely to make sure you’re safe. You’ll have blood tests at 1 month, 3 months, and 12 months after your transplant to watch for any infections. If an infection happens, which is rare, treatments are available, and you would be treated by a team of specialists.

It’s best to think about your decision for increased risk donor organs before you’re offered the organ, and not wait until you get the offer.

Learn more about increased risk donors (video) and talk to your transplant team if you have any questions or concerns about the risks of accepting an increased risk donor organ.

What will happen at the hospital before my transplant?

Before your transplant, your healthcare team will:

• complete your medical history and do a physical exam
• do blood and urine tests
• do a chest x-ray and a heart test, called an electrocardiogram (ECG)
• insert an intravenous line (I.V.)
• review consent forms for you to sign
• do other tests that you may need

What happens during the surgery (in the operating room)?

The Your Surgery Journey video series can help you get ready for surgery and explains what happens at different steps.

When you are taken into the operating room, a specialist called an anesthesiologist will discuss the consent process, ask you some questions, and then give you medicine to put you to sleep for the entire surgery time. How long the surgery takes can be different for everyone but is usually 6 hours or longer.

After you are asleep, the surgery team may insert the following tubes:

• Intravenous (I.V.) lines to give you fluid and medicines.
• Central lines to measure how much fluid you have in your body.
• Arterial line to measure your blood pressure.
• Breathing tube to help your breathing. The breathing tube is attached to a breathing machine (a ventilator).
• Nasogastric tube to drain the contents of your stomach.
• Foley catheter to drain urine (pee) from your bladder.
• Drains to remove blood and body fluids from around the surgical area.

During a liver transplant, your diseased liver and your gallbladder will be removed.

Staples will hold your incision (cut) together. The staples will stay in place until your incision heals. A large bandage called a dressing will cover your incision for a few days. The dressing protects your incision. Your nurses will change it as needed.

What are the possible complications of liver transplant?

Complications of surgery can include:

• excessive bleeding
• blood clots
• infection
• rejection of your new liver

The transplant team will watch you carefully for any complications. Report any new or unusual symptoms to your team.