How do I get referred to the Heart Transplant Program?
Your cardiologist (heart specialist) can refer you to the Heart 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. Your referral will either be:
- Accepted, and you move on to the evaluation phase.
- Accepted, but you are not ready for evaluation. The transplant team will talk with you about further treatment.
- Closed (stopped). If your referral is closed, the doctor who referred you to the transplant program will continue with your care.
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 heart 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 or Calgary area, you and your support person may be required to stay in Edmonton or in Calgary for approximately 3 months after your transplant.
What happens in the heart 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 completion of your evaluation will depend on your current
health situation, your ability to commit to getting your tests completed, and the availability of the tests.
You will be assigned a heart transplant coordinator at this time who will let you know about the next steps.
You and your support person will meet many members of the heart transplant team like doctors, nurses, administrative staff, social workers, and dietitians. You may also meet with pharmacists, psychologists, psychiatrists,
physiotherapists, occupational therapists, or other healthcare providers.
You will have several tests, including x-rays, ultrasounds, CT scans, other heart tests, and blood, stool 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?
Your transplant coordinator will:
- Give you a letter to take to your local public health centre or refer you to the Communicable Disease Unit to make sure your immunizations are up to date. Some immunizations cannot be done after a transplant.
- Give you a letter to take to your dentist to check for any infections or cancer.
Do not make these appointments until you have been given the letter by your transplant coordinator.
During the evaluation phase, you should also 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.
What can I expect while on the transplant waitlist?
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 a 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 may vary from hours to years. How long you wait on the waitlist depends on factors like your blood type and tissue matching, body size, and how sick you are. It does not necessarily depend on how long you
have been waiting.
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.
Continue to avoid using all tobacco, nicotine or cannabis products, smoking or vaping any substance, and using street drugs before and after your transplant. It is also recommended to avoid alcohol use. If you need help not using these
substances, reach out to your transplant team.
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 these 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. They will give you the necessary lab requisitions.
Contact your transplant coordinator 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, and email address)
- change of support person
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.
If there is a change in your health and you no longer meet the criteria for a heart transplant, or if it’s not in your best interest, you may be put on hold or be removed from the transplant waitlist.
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.
Make sure to include the following:
- your healthcare card, picture ID, and health insurance or disability cards
- 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)
- all VAD equipment (if you are a VAD patient), including batteries, controllers, power unit, and shower bag
- 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.
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 or Calgary.
How can I cope while waiting for a transplant?
If you are feeling stressed, you are not alone. Waiting for a heart 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.
What happens when I get the call for my heart transplant?
Once a heart 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 a heart can be transplanted. If the transplant team cannot reach you, or if you are not ready, willing, or able to accept the new heart, they will offer the heart to another person on the
waitlist. The transplant team does not know how long it will be until another heart becomes available.
Learn what you need to know about receiving the call for a transplant (video).
The transplant team will only offer you a transplant if it is suitable for you.
What is exceptional distribution?
Transplants are regulated by Health Canada. There are strict rules for assessing and testing donor organs 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 will 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).
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 during regular office
hours to help guide you.
Where do I go to get my heart transplant?
Heart 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 heart. 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 a transplant and can reassure you that transplants are happening. It may help you be more prepared for 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
- complete other tests you may need
- have an intravenous line (I.V.) inserted
- have your neck, groin, and chest area shaved
- take a shower using special surgical soap
- review and sign consent forms
What happens during the surgery (in the operating room)?
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:
- Central line to measure how much fluid you have in your body and the pressure in your heart. It is also used to give medicines.
- Arterial line to measure your blood pressure and take blood samples.
- Breathing tube attached to a breathing machine (ventilator).
- Chest tubes to drain blood and fluid and help re-expand your lungs.
- Temporary pacing wires to help control your heart rate and heart rhythm.
- 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 function.
During your surgery, a machine called a cardiopulmonary bypass machine takes over the work of your heart and lungs.
If you have a cardiac device (pacemaker or AICD) or VAD, these will be removed during the surgery.
Your diseased heart will be removed and replaced with the healthy donor heart.
How long the surgery takes can be different for everyone. It usually takes 6 to 12 hours.
Your incisions (cuts) may be held together by staples or sutures. These will stay in place until removed by your transplant team. A large bandage called a dressing protects your incisions and will be changed by your nurses as needed.
What are the common problems of heart transplant surgery?
Problems from the surgery can include:
- bleeding more than expected
- blood clots
- infection
- the new heart doesn’t work properly right away
- worsening kidney function (You may need dialysis during your recovery. Most times this is short term, but in some cases, it may be long term or permanent.)
The transplant team will watch you carefully for any problems.
