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 evaluation phase of the process, or your referral will be declined. Every case and experience is different.
Should I have a support person?
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 needs to be able to help you during all phases of the transplant: evaluation, waitlist, surgery, recovery, and follow-up.
You can choose someone like your partner, a family member, or a good friend who knows you well and is willing to make the commitment.
Your support person will need to:
- give their names and phone numbers to the liver transplant team
- be present for any teaching sessions (before and after transplant)
- go to appointments with you
- encourage you
- listen to your concerns
- help you with taking your medicines
- be there to help you during your recovery
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. This time can be different for everyone depending on your recovery after transplant.
What happens in the liver transplant evaluation phase?
The evaluation phase, also called the work-up or assessment phase, helps the transplant team decide if a transplant is the best option for you.
Most evaluations are done as an outpatient over a few weeks to months. Being an outpatient means you will not stay in the hospital overnight. The timing of your appointments and how long it takes to complete your evaluation will depend on your current health situation, your ability to commit to getting your tests done, and the availability of the tests.
You will be assigned a liver transplant coordinator at this time, who will let you know about next steps.
During your evaluation, you and your support person will go to a clinic visit with one of the transplant program’s surgeons and you will also meet with other members of the transplant team, like doctors, nurses, social workers, dietitians, psychologists, physiotherapists, and administrative staff.
You will have several tests, including x-rays, ultrasounds, blood and urine tests. You may also need additional testing.
The transplant team will not make any decisions about placing you on the transplant waitlist until they have received all your information, and they've had a chance to meet and discuss your case.
What else do I need to do during the evaluation phase?
- The transplant team will talk to you about making 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.
- We suggest you see your family doctor or primary care provider to make sure you are up to date with routine cancer screening for prostate, breast, colorectal, cervical, and skin cancer.
Your case will be reviewed by the entire transplant team after they have received and discussed all your evaluation information. If they decide a transplant is your best treatment option, and you agree, you will be placed on the transplant waitlist. Learn more about being on the
transplant waitlist (video).
If transplant is not an option for you at this time, the transplant team will talk with you about the reason why and about your follow-up care.
The waiting time for any organ can vary from hours to years. How long you wait on the waitlist depends on factors like your blood type, body size, blood test results, and how sick you are. It does not necessarily depend on how long you have been waiting.
What can I expect while on the transplant waitlist?
Stay healthy, eat well, exercise, and get plenty of rest. The transplant team’s dietitian can help you with your diet. Learn more about eating well with cirrhosis and use the resources at The Wellness Toolbox and Cirrhosis Care.
Continue routine visits with your family doctor and any specialists you have. These healthcare providers will continue to care for you while you are on the waitlist. You are responsible for making appointments and continuing your lab work as instructed by these healthcare providers.
Some of your evaluation testing will need to be repeated while you are on the waitlist. Your transplant team will tell you which tests need to be repeated and how often.
Contact your transplant coordinator during regular working hours about any of the following:
- changes in your current health conditions
- new infections or illnesses
- new medicines or changes to your medicines
- admissions to a hospital
- if you receive blood products
- worsening of your symptoms
- if you are planning to travel
- any change in contact information for you or your support person (including phone numbers, address, email address)
- any change of support person
If there is a change in your health and you no longer meet the criteria for a liver transplant, or if it’s not in your best interest, you may be put on hold or be removed from the transplant waitlist. Your transplant team 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!
How can I plan for a transplant?
Transplants can occur at any time on any day. The transplant program needs to be able to contact you 24 hours a day when an organ becomes available. 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.
- Calls with an organ offer often show as unknown numbers. Make sure you answer these calls and do not block unknown numbers on your phone.
- Save important phone numbers to your mobile device, like your liver transplant program, your insurance provider, and your support person.
- 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.
Make sure to include the following:
- your healthcare card, picture ID, and health insurance or disability cards
- your medicines
- toiletries (deodorant, toothbrush, toothpaste, and comb or brush)
- slippers, comfortable clothing, and shoes for activity
- chargers for any electronic devices
- glasses and hearing aids (and extra batteries)
- diabetes supplies (if you have diabetes)
- CPAP machine (if you use one)
- weigh scale, blood pressure machine, and thermometer (you will need these items when you leave the hospital after your transplant)
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.
Pack as much as you can ahead of time. Keep a list of items you cannot pack ahead of time and any last-minute tasks (like people to call or things to do) on top of your packed bag.
Your support person (if they are not from Edmonton) will also need to have a bag packed with a last-minute list of things to pack and do.
Other things you need to think about when planning for a transplant include:
- Arrange for someone to get your mail, pay your bills, and take care of your children and your pets while you are away.
- Depending on where you are from, you may need to make your own arrangements and pay for transportation to the hospital.
- Have a plan for accommodations for the time you and your support person are staying in Edmonton.
How can I cope while waiting for a transplant?
If you are feeling stressed, you are not alone. Waiting for a liver transplant may cause fear, anxiety, and feelings of being overwhelmed.
To help you through this time:
- Do not use substances for coping.
- Know and understand your health condition.
- Talk about your health condition and health decisions with trusted, knowledgeable people, such as your transplant team.
- Use your friends and family for support.
- Take time for yourself.
- Keep doing your normal daily activities and exercises within your limits.
- Set goals that keep you as independent as possible.
- Enjoy some relaxing hobbies or activities.
- Learn and practice relaxation methods.
- Ask your transplant team about local support groups in your area.
If you feel you need additional support to cope, ask your transplant team about being referred to someone, or contact the following resources:
- If you are an Alberta resident, or are staying in Alberta, you can call the Mental Health Helpline at 1-877-303-2642.
- Call or text the National Suicide Prevention and Mental Health Hotline at 988.
Visit Help in Tough Times for a list of resources that can help you.
Once a liver becomes available, someone from the transplant team, usually a coordinator, will contact you by phone. It may not be your own coordinator who contacts you.
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 will offer the liver to another person on the waitlist. The transplant team does not know how long it will be until another liver becomes available.
Learn what you need to know about
receiving the call for a transplant (video).
The transplant team will only offer you a liver if it is suitable for you.
What is exceptional distribution?
Transplants are requlated by Health Canada.
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.
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 an infection or a cancer.
- 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. Many organs are transplanted under exceptional distribution. The next suitable organ for you may also be under exceptional distribution.
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. Many organs are transplanted from increased risk donors. The next suitable organ for you may also be from an increased risk donor.
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 happens after I accept the offer?
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:
- tell you when to stop eating and drinking
- tell you if you should continue to take your regular medicines
- talk with you about transportation. How far away you live and the timing of the transplant will determine how you get to the hospital. You may need to drive, take a ground ambulance, or take an air ambulance. Depending on where you are coming from, you may need to pay for some of the cost. Your support person may have to find their own transportation if you are being sent to the hospital by air ambulance. If you and your support person are driving to the hospital, tell the transplant team if there will be any delays in you getting there.
You need to book accommodations for the time you and your support person will be in Edmonton. You are responsible for your own living costs during this time. If you need assistance, a social worker is available to help.
Where do I go to get my liver transplant?
Liver transplants are done in Edmonton, at the University of Alberta Hospital. The transplant team will give you instructions on where to go when you arrive at the hospital.
Is there a reason my transplant may be cancelled?At any point in time after you have been offered an organ, the 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 of a problem with the donor, you will stay on the waitlist and wait for another liver. 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.
While this may be disappointing, this gives you a chance to see what happens when you are called for transplant and can reassure you that transplants are happening. It may help you be more prepared the next time you get called.
In the event of a dry run, you are responsible for finding and paying for your transportation home. You may be discharged right away or have to stay in the hospital for a few days.
Sometimes, people can have several dry runs.
If you or your family members experience any coping difficulties following a cancellation or dry run, reach out to your transplant team.
What will happen at the hospital before my transplant?
Before your transplant, you will:
- have blood and urine tests
- have a chest x-ray and a heart test, called an electrocardiogram (ECG)
- complete other tests as needed
- have an intravenous line (I.V.) inserted
- have your abdomen area shaved
- take a shower using special surgical soap
- review and sign consent forms
The
Your Surgery Journey video series can help you get ready for surgery and explains what happens at different steps.
Before your surgery, a specialist called an anesthesiologist will ask you some questions. When you are in the operating room, they will give you medicine to put you to sleep for the entire surgery time.
After you are in the operating room, the following tubes and lines will be placed:
- Intravenous (I.V.) lines to give you fluid and medicines.
- Central lines to measure how much fluid you have in your body and the pressure in your heart. These are also used to give medicines.
- Arterial line to measure your blood pressure and take blood samples.
- Breathing tube attached to a breathing machine (ventilator).
- Nasogastric tube to give medicines and drain the contents of your stomach.
- Foley catheter to drain urine (pee) from your bladder and monitor your kidney funtion.
- 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 and replaced with a healthy donor liver.
How long the surgery takes can be different for everyone but is usually 6 hours or longer.
Staples will hold your incision (cut) together and will stay in place until your incision heals. A large bandage called a dressing protects your incision and will be changed by your nurses as needed.
What are the common problems of liver transplant surgery?
Problems from the surgery can include:
- bleeding more than expected
- blood clots
- infection
- the new liver doesn't work properly right away
The transplant team will watch you carefully for any problems.
