​​​​​​​​​​​​​​​​​​​​​​​​​​​​What does your liver do?

The liver stores fats, sugars, iron, and vitamins. The liver also makes proteins and helps to absorb food, break down fats, change food into nutrients, and control your blood sugar. It filters your blood to remove substances and toxins that can be harmful to the body.

Who can get a liver transplant?

A liver transplant may be considered as a treatment option for people with certain types of liver disease and end-stage liver disease. End-stage means that your liver may no longer be able to keep you alive. There are many different causes of end-stage liver disease.

Who can donate a liver or part of a liver?

You can get a liver from a deceased donor (someone who has died) or from a living donor (a living person who donates part of their liver). Learn more about living liver donation (video).

If someone is interested in being a living liver donor for you, have them call the living donor program in Edmontonafter you are on the waitlist for a liver transplant.

Is a liver transplant right for me?

A liver transplant is not suitable for everyone. With a transplant, you are exchanging sick organs for healthy ones, with the hope of living longer and having a better quality of life. It is important to know that getting a transplant involves a lifetime commitment to medical treatment, like taking medicines every day, going to clinic appointments, and doing regular bloodwork and other tests.

A transplant is offered only when all other treatment options have been tried.

If you have or have had a serious disease or certain types of cancer, you may not be eligible for a transplant. Your transplant team will review your medical history to see if a transplant is an option for you.

If you smoke tobacco or cannabis, you will need to stop before you are able to go onto the waitlist for a liver transplant. Smoking increases the chance of problems after surgery.

Anyone with a history of drug or alcohol use will need to be assessed by an addictions counselling team. Support is available. Your transplant team can help connect you to counselling and other services. If you do not use the counselling and follow-up services for substance use that the transplant program recommends, you will not be eligible for a transplant. You may need to do random alcohol or drug tests while you are on the transplant​ waitlist and after your transplant.

​​​​​​​​​​​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.

​​​​​​​​​​​​​​​​​​​​​Where do I go after my surgery?

After your transplant surge​ry, you will go to the intensive care unit (ICU). The ICU team will care for you. How much time you spend in​ the ICU is different for everyone.

Once you are stable and your breathing tube has been removed, you will be sent to an inpatient unit.

You will be weak after your surgery, but you will slowly resume an active role in caring for yourself.

What can I do in the hospital after my surgery to help with my recovery?

• Follow the instructions of your healthcare team.
• Ask for medicines when you are in pain.
• Practice deep breathing and coughing techniques.
• Change positions in bed and keep moving your arms and legs.
• Work with the physiotherapist to help regain your strength.
• Work with the occupational therapist to help you get back to your daily activities.

If you have mental health issues like depression or anxiety, it’s possible that these may get worse after your transplant. Your post-transplant team can contact transplant social work for assessment and possible referral to a mental health specialist. Visit Help in Tough Times for a list of resources that you can access when you’re feeling stressed or are having a difficult time.

When will I be able to leave the hospital after my liver transplant?

After a liver transplant, everyone stays in the hospital for a different amount of time.

You will leave the hospital when:

• The surgical and medical teams decide that you are medically and physically stable enough to go home.
• You have talked to your post-transplant coordinator, transplant pharmacist, diabetes educator (if needed), and transplant social worker (if needed).
• You have received and read your post-transplant material and watched the videos on cytomegalovirus (CMV), Epstein Barr virus (EBV), and increased risk donors (IRD) (if applicable).
  
• You have learned how to take your own medicines.
• You are able to recognize the signs of infection and rejection.

What do I need to do on the day I leave the hospital (day of discharge)?

On the day you leave the hospital, make sure that you have:

• picked up your medicines and reviewed them with your nurse
• received information about where and when to get your lab tests done
• received follow-up appointment information for the transplant hepatology clinic and the transplant surgery clinic
• reviewed your After Visit Summary (AVS) with your nurse or transplant coordinator
• your support person available to drive you home from the hospital​
  

​​​​​​​​​​​​​​What kind of medicine will I need to take after my liver transplant?

Anti-rejection medicines (also called immunosuppression medicines) prevent your immune system from attacking the transplanted liver. Anti-rejection medicines include:

• tacrolimus (common brand names: Prograf, Advagraf, or Envarsus)
• mycophenolate mofetil (common brand name: Cellcept)
• sirolimus (common brand name: Rapamune)
• prednisone (common brand name: Deltasone)
• cyclosporine (common brand name: Neoral)

You will need to take anti-rejection medicines every day for the rest of your life. Not taking these medicines as instructed, or missing doses, may lead to your liver not working properly or not working at all.

Take these medicines at the same time of day that you took them in hospital. Never stop taking these medicines or change your dose without first talking to a member of the liver transplant team.

Always have at least a 2-week supply of medicines at home and do not run out.

When you take anti-rejection medicines:

• You will need to get bloodwork done often to monitor your medicine levels. Your blood sample needs to be taken before you take your anti-rejection medicine.
• Many prescription, over-the-counter, and herbal medicines can interact with your anti-rejection medicines.
• Before you start taking a new medicine, always confirm with your pharmacist that it will not interact with your anti-rejection medicines. Notify your transplant team of any new medicine you start that is ordered by another doctor.
• You should not take non-steroidal anti-inflammatory drugs (NSAIDs) like Advil, ibuprofen, Motrin, naproxen, and Aleve. You can use acetaminophen (Tylenol), but should not take more than 3,000 mg in 24 hours from all sources.
• Some foods will interact with your anti-rejection medicines. Talk to the transplant team to learn more about which foods to avoid.
• Tell your pharmacist, dentist, and all other healthcare providers that you are taking anti-rejection medicines.
• Do not get pregnant or get someone pregnant while on anti-rejection medicines without first talking to a member of the transplant team. Ask the transplant team about using birth control, as some forms of birth control work better with anti-rejection medicines than others.
• Anti-rejection medicines can increase your risk of some types of cancer. For more information, talk to the transplant team.

There are other medicines you might also need to take:

• medicines to protect your stomach from ulcers caused by other medicines
• antibiotics, antivirals, or both to help protect you against infection
• antacids (but do not take antacids within 2 hours of taking any anti-rejection medicines)
• water pill (also known as a diuretic) to help your body remove extra fluid
• medicines to keep up with essential nutrients like calcium, magnesium, or iron
• medicines to prevent pneumocystis pneumonia, including sulfamethoxazole-trimethoprim, atovaquone, or pentamidine (common brand names of these medicines are Septra, Bactrim, Co-Trimoxazole, and Mepron)
• medicines to prevent or treat cytomegalovirus (CMV), including valganciclovir (common brand name: Valcyte)
• medicines to prevent or treat herpes virus infections, including valacyclovir (common brand name: Valtrex)
• medicines to prevent or treat fungal infections

The following table is a general guide about common transplant medicines.

• the name and reason for each medicine
• when to take each medicine
• how to take each medicine
• how to store each medicine
• side effects of each medicine
• what to do if you forget to take a dose
• when to order more medicine so it doesn’t run out

Your healthcare team will teach you about your medicines while you are in the hospital. While in hospital, you will start giving yourself the medicines with directions from the nurses. This will help you become familiar with the number of new medicines you will need to take at home by yourself.

​​​​​​​​​​​​How long will I need to take medicines after my surgery?

You will need to take anti-rejection medicines every day for the rest of your life. Not taking these medicines as instructed, or missing doses, may lead to your liver not working properly or not working at all.

Talk to your transplant team if you have any questions about how long you’ll need to take each medicine.

​​​​​​​​​​​​Is the cost of transplant medicines covered by Alberta Health?

Funding for high cost transplant medicine (like tacrolimus, sirolimus, cyclosporine, and mycophenolate mofetil) is available to Alberta residents through the Specialized High Cost Drug Program. Ask your healthcare team for a list of pharmacies that participate in this program.

The Specialized High Cost Drug Program provides funding for some high cost medicines, but you may still need to pay for, or have separate insurance coverage for, some of your other non-transplant medicines, like antibiotics or pain medicine.

If you are not a resident of Alberta, you may need to pay for your medicines or check your own insurance coverage for them.​​