How do I get referred to the Lung Transplant Program?
A lung specialist (respirologist or pulmonologist) can refer you to the Lung 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 be booked for a consult appointment with the transplant team or your care will stay with your lung specialist.
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 or persons will need to:
- give their name and phone number to the lung 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.
If you are an organ recipient from Manitoba, you will be transferred directly from the Edmonton hospital to the Winnipeg hospital after your transplant.
What happens in the lung 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 and which procedure would benefit you the most: single lung, double lung, or a combined heart-lung transplant.
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 lung transplant coordinator at this time, who will help you navigate through your transplant journey. Your coordinator may change to someone different if you go on to receive a transplant.
During your evaluation, you and your support person will meet many members of the lung transplant team, like doctors, nurses, social workers, dietitians, psychologists, physiotherapists, occupational therapists, and administrative staff.
You will have several tests, including x-rays, ultrasounds, blood and urine tests, lung tests, and heart tests. Depending on the results of these tests, and your health history, 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.
What else do I need during the evaluation phase?
- Your 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.
- 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. A member of the transplant team will call you to let you know you are 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.
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.
What can I expect while on the transplant waitlist?
Pre-lung transplant rehabilitation and education program (not for Manitoba patients)
Once you have been placed on the waitlist, you are required to attend a 4-week pre-lung transplant rehabilitation and education program at the University of Alberta Hospital in Edmonton. When you attend the program will depend on your medical needs and when the program is available.
While you are attending the program, you are responsible for your living expenses in Edmonton. Talk to your transplant team if this is a challenge for you.
The program runs Monday through Friday. In the pre-lung transplant program, you will do exercises taught by physiotherapists that are designed to maintain or improve your strength, endurance, and flexibility. You will also learn energy conservation and stress management strategies from occupational therapists to better manage your daily routine.
You will be monitored to make sure you are safe while participating in this program. Once a week (or more often if needed), you will go to the transplant clinic in Edmonton so the transplant team can monitor your medical condition and address any concerns or questions you have about transplant.
You and your support person will also take part in individual and group learning sessions with different members of your healthcare team and you will have a tour of the cardiovascular intensive care unit (CVICU) in Edmonton.
Staying healthy to better your chance of a good outcome after transplant
Once your pre-lung transplant rehabilitation and education program is over, you will need to remain physically active to better your chance of a good outcome after transplant. You may continue with physiotherapy or another exercise specialist in your community.
You will continue to be seen regularly in the lung transplant clinic. These clinic visits may take place in person or virtually.
Stay healthy, eat well, exercise, and get plenty of rest. The transplant team can help you with your diet and exercise.
Continue routine visits with your family doctor, referring lung specialist, and any other specialists you have. These healthcare providers will continue to care for you while you are on the transplant 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 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, or email address)
- change of support person
If there is a change in your health and you no longer meet the criteria for a lung 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 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 lung 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)
- oxygen supplies (tanks for travelling to the hospital and concentrator for temporary accommodations while in Edmonton)
- CPAP machine (if you use one)
- diabetes supplies (if you have diabetes)
- weigh scale, blood pressure machine, 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 in 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. If you need assistance, a transplant social worker is available during regular office hours to help guide you.
How can I cope while waiting for a transplant?
If you are feeling stressed, you are not alone. Waiting for a lung 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 conditions.
- 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.
- Join a local support group through your local lung association.
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 lung transplant?
Once lungs become available for you, 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 lungs can be transplanted. If the transplant team cannot reach you, or if you are not ready, willing, or able to accept the new lungs, they will offer the lungs to another person on the waitlist. The transplant team does not know how long it will be until other lungs become 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 exeptional distribution?
Transplants are regulated 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. Don't wait until you get the offer.
Talk to your transplant team if you have any questions or concerns about exceptional distribution.
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) 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 (driving, ground ambulance, or air ambulance). Depending on where you are coming from, you may need to pay for some of the cost of getting to the hospital. Your support person may have to find their own transportation if you are being sent to the hospital by 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 transplant social worker is available during regular office hours to help guide you.
Where do I go to get my lung transplant?
Lung 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 there is a problem with the donor, 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.
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 a 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 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)?
The
Your Surgery Journey Video Series can help you get ready for surgery and learn 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, the anesthesiologist 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. 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).
- 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.
- Drains to remove blood and body fluids from around the surgical area.
During your surgery, a machine called a cardiopulmonary bypass machine is sometimes used to take over the work of your heart and lungs.
A transplant surgeon will remove your diseased organs and replace them with the healthy donor organs.
How long the surgery takes can be different for everyone but is usually 6 to 10 hours.
When the operation is completed, your incision (cut) is closed and chest tubes will be inserted to help your lungs expand and to remove any fluid or blood from around them. The chest tubes are taken out usually within a few days.
Staples will hold your incision 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 lung transplant surgery?
Problems from the surgery can include:
