​​How do I get referred to the Intestinal Transplant Program?

Your family doctor or a gastroenterologist can make a referral to the Intestinal Transplant Program. Gastroenterologists are specialists who work with the esophagus, stomach, intestine, liver, pancreas, gallbladder, and bile ducts.

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 intestinal transplant?

The purpose of the assessment phase is to help the transplant team determine if a transplant is the best option for you. There are 2 parts to the assessment phase: a clinic visit and a full assessment.

The first part of the assessment phase is a clinic visit with one of the transplant program’s surgeons in Edmonton. The surgeon will meet with you and review your previous history and tests. After this review, the transplant team will decide whether or not to arrange a full assessment for you.

If you are approved for a full assessment, you will have to come back to the University of Alberta Hospital in Edmonton at another time to complete this.

When you return for the full assessment, you will meet with other members of the transplant team including doctors, nurses, social workers, dietitians, psychologists, and administrative staff.

During your full assessment, you will get several tests, including x-rays, ultrasounds, and lab tests. You may also be referred for additional testing or consultations with other healthcare providers.

The timing of your appointments will depend on your current health situation and needs.

• If you are an adult, the appointments for your full assessment will take at least 3 to 5 days to complete.
• If you are a child or teen (under 18 years old), you will likely be admitted to the hospital for your testing. The full assessment will take 5 to 10 days to complete.

When all of your testing has been completed, you and your transplant team will decide on the best course of action 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 to make sure your immunizations are up-to-date. You should complete all of your immunizations before getting a transplant. Talk to your transplant team for a list of recommended immunizations.

If you smoke or drink alcohol, you will need to stop before you are able to go onto the waitlist for an intestinal transplant. Anyone with a history of drug or alcohol use will need to be assessed by a provincial addictions counselling association. 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 may not be eligible for the waitlist.

Should I have a support person during my intestinal 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. For a child or teen getting a transplant, the support person is usually a parent, guardian, or grandparent. 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
• stay with you in Edmonton after your transplant
• be there to help you during your recovery

After your transplant, you and your support person should plan to stay in Edmonton for 3 to 6 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 that the Intestinal Transplant Program can contact you at any time. When an organ becomes available, they will need to reach you right away. A cellphone is the best way for the program to reach you. Carry it 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. The Intestinal Transplant 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. Talk to your transplant team if you don't have a cellphone.
• 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. Depending on how you are getting to the hospital, you may need to bring money to cover transportation costs. Your support person can keep a small amount of money in case you need it while you are at the hospital.
• 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 gastrointestinal (GI) specialist. You are responsible for making these appointments. Continue to have your lab work done as instructed by your healthcare providers.
• Contact your transplant coordinator to let them know about any changes in your health, like infections, new medicines, 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 intestinal transplant?

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

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.

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 cellphone 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 (probably not your own coordinator) 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. It’s important to tell the coordinator if there will be any delays in you getting to the hospital.
• Follow the coordinator’s instructions on when to stop eating and drinking. If you monitor your blood sugars, continue to do so. If you have a low blood glucose, you will need to treat your low and let the coordinator know this has happened.
• For children who are on total parenteral nutrition (TPN), the coordinator will tell you if you should keep the feeds going.

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 intestine or other 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.

Where do I go to get my intestinal transplant?

If you are an adult, you will go to the University of Alberta Hospital in Edmonton.

If you are a child or teen (under 18 years old), you will go to the Stollery Children’s Hospital​ in Edmonton.

In both cases, go to the admitting department when you arrive at the hospital, unless the coordinator gives you other instructions.

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
• insert an intravenous line (IV)
• give you an enema (adults only)
• review consent forms for you to sign
• do a chest x-ray

What happens during the surgery (in the operating room)?

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. For children getting a transplant, 1 parent or guardian can stay with the child until this medicine is given.

After you are asleep, 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.
• In children, a gastrostomy tube (G-tube) may also be placed to help with nutritional needs.

During the surgery, you will be given an ileostomy. This is when a loop of bowel comes to the surface on your stomach. You will have to wear a special bag over this area to collect stool. The transplant team also uses this section of your bowel to get the intestinal biopsies they need to look for rejection after your transplant.

Staples will hold your incision (cut) together. As your incision heals, your nurse will remove the staples. The staples will stay in place at least 3 weeks after your transplant. 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.