How do I get referred to the Pancreas Transplant Program?

Your diabetes specialist (endocrinologist), or kidney specialist (nephrologist) can make a referral to the Pancreas 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 your referral, 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.

What happens in the assessment (work-up) phase for my pancreas 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. You may be asked to submit 4 weeks of your blood glucose records that include at least 4 glucose tests per day.

The appointments for your assessment may take weeks to months to complete. The timing of your appointments will depend on your current health situation and needs.

When your testing is done, you will have a clinic visit with one of the transplant program’s surgeons. The surgeon will meet with you and review your previous history and tests. You may also meet with other members of the transplant team including doctors, nurses, social workers, dietitians, psychologists, and administrative staff.

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 pancreas transplant is an option for you.

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

You will need to make an appointment to see your dentist.

This is also a time for you to contact your local public health centre or get a referral to the Communicable Disease Unit to make sure your immunizations are up-to-date. Talk to your transplant team for a list of recommended immunizations.

Should I have a support person during my pancreas transplant?

Yes. In fact, you must have a support person throughout your transplant journey. A support person can be anyone you choose. They should be able to help you during all phases of the transplant: assessment, waitlist, transplant, 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.

Your support person will need to:

• 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

After your transplant, you and your support person should plan to stay in Edmonton or Calgary for up to 3 months before going home.

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 considered 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.

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

While you are on the waitlist:

• Make sure the Pancreas Transplant Program can contact you at any time. When an organ becomes available, they will need to reach you right away. The program needs to be able to reach 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 smart phone) is the best way for the program to reach you.
  • Carry your mobile device with you at all times.
  • Make sure that your voice mail is set up.
  • If you have caller ID, calls from hospital phone numbers may show as an unknown number. Make sure you answer these calls and do not 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 health card, picture ID, medicines, and comfort items like a bathrobe, slippers, toothbrush, and comb.
  • Don’t 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 or Calgary, you will need to make your own arrangements for accommodations. Try to have these plans in place before you get called for transplant.
• Arrange for someone to get your mail, pay your bills, and take care of your pets and your children while you are away.
• Continue routine visits with your family doctor and any specialists. You are responsible for making these appointments. Continue to have your lab work done as instructed by your healthcare providers.
• You will be seen one time every year in the pancreas transplant clinic. You may be seen earlier or more often if there is a concern.
• Contact your transplant coordinator to let them know about any changes in your health, like infections, new medicines, blood transfusions, or any admissions to a hospital.
• Tell the transplant team if you are planning a vacation, especially if you are leaving the province.
• It is important to stay healthy, eat well, exercise, and get plenty of rest.

There may be times when you are placed on hold while on the waitlist. Your 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.

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

There is a limited amount of time during which the organ or organs can be transplanted. If the transplant team cannot reach you, or if you are not ready, willing, or able to accept the offer, they may offer the organs to the next person on the waitlist.

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

Health Canada has strict rules around transplant. The transplant team will only offer you a transplant if the available organ or organs are suitable for you.

Once you have accepted the transplant 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.
• A transplant coordinator or transplant doctor will talk to you about how you will get to the hospital. This will depend on how far away you live and the timing of the transplant. Tell them 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. Continue to monitor your blood glucose levels. If you have a low blood glucose, treat your low and let the team know this has happened.

When you get to the hospital, go to the admitting department, unless you are given other instructions.

In rare 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 this happens, your transplant will be cancelled, and you will go back home. You will need to find your own transportation to get home. If the transplant is cancelled due to a problem with the organ or organs, you will stay on the waitlist and be offered a transplant again at another time. If the transplant is cancelled due to a safety issue found with you, this may need to be looked at further to make sure that 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 released for transplant and offered to you under what’s 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 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.

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

When you’re 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 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 history and do a physical examination
• do blood and urine tests
• do a chest x-ray and ECG
• insert an intravenous line (IV)
• give you an enema if needed
• review consent forms for you to sign

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 of your surgery journey.

When you are taken into the operating room, a specialist called an anesthesiologist will ask you a few questions and then give you medicine to put you to sleep.

After you are asleep, along with transplanting the organ or organs, the surgery team may insert the following tubes:

• More IV lines to give you fluid, salts, sugar, and medicines.
• Central lines: measure how much fluid you have in your body.
• Arterial line: measures your blood pressure.
• Endotracheal tube (breathing tube): assists your breathing. It is attached to a breathing machine (a ventilator).
• Nasogastric tube: drains the contents of your stomach.
• Foley catheter: drains urine from your bladder.
• Drains: drain blood and body fluids from around the surgical area. You may have 2 or more of these tubes.

The surgery takes about 6 hours.

During the surgery, the surgeon will attach your new pancreas to your small bowel. The surgeon will not remove your pancreas. Even if your pancreas is not making insulin, or not making the right amount of insulin, it still works to make enzymes to digest your food.