Is there anything I need to do while I wait for a transplant?
Help your transplant team reach you
When you go on a transplant list for a deceased donor transplant, your transplant team must be able to contact you and your parents at any time of the day or night.
- If you are going out with friends, have a cell phone with you and keep it charged or give a number where your parents can reach you.
- If you are sleeping over at a friend’s house, make sure your parents can call you at any time and know how to get to the address if they need to bring you to the hospital for surgery.
- Write down all telephone numbers of the places where you usually spend your time and give them to your transplant team. Include the homes of friends and relatives in case your cell phone battery runs out.
- If you are planning on going out of town for the weekend or longer, make sure your transplant team has all your contact information. You should also have a plan for getting to the hospital if you are called for your surgery.
- Your family should plan vacations only to places that are within four or five hours’ drive of your transplant hospital. If you travel further, there is a chance that you could miss the opportunity to get a kidney if you are called while you are away. As well as planning vacations closer to home, always have a plan to get to the hospital if you need to.
Stay in contact with your transplant team
Call your transplant team if:
- you have a blood transfusion for any reason
- you are on dialysis
and have
- any central line infections
- any episodes of peritonitis (an infection of the peritoneum)
- you have any infections with a fever
- your medical condition changes in any other way.
Keep dental appointments
Visit your dentist every six months. This will allow your dentist to treat any infection or source of infection (such as cavities). You must be free of infection at the time of your transplant.
Attend transplant clinic blood work appointments
Go to the transplant clinic to have your blood taken every three months. The transplant clinic will take your blood so that it can quickly do some matching tests when a donor becomes available. This bloodwork is very important. If you miss your appointments, the team cannot match you with available donors.
Get any important vaccinations
Keep your
vaccinations up to date. Talk to your transplant team if you have any questions, especially if you are considering getting a live vaccine while waiting for a transplant.
Start packing a bag to bring to the hospital
Because nobody can predict when you will be called in for a deceased donor transplant, it's a good idea to use your waiting time to gather the things you need to bring to the hospital.
How long will it be before I get a transplant?
Everyone’s wait time for a suitable organ is different. Teenagers generally wait less than a year for kidney transplants in Canada, but this is not always the case.
Your transplant team will want you to be as healthy as possible at the time of your transplant and will consider different factors to make sure that you are ready for an organ when the time comes. These include:
- your blood group
- whether your blood contains antibodies that could lead you to reject a transplant kidney (see below)
- whether you get an infection while you are on the wait list
- whether you get any live vaccines
- any other changes in your overall health.
Antibodies
Some teenagers waiting for a transplant have antibodies in their blood that could interfere with the success of a transplant. These antibodies are sometimes called your PRA (panel reactive antibodies). They are expressed as a percentage.
- 0% means you have no antibodies.
- Less than 30% is a low level of antibodies.
- 30-79% is a medium amount of antibodies.
- More than 80% is a high number of antibodies.
The higher your level of antibodies, the longer it will take to find a kidney that will match you. However, it is also possible to have treatments that will reduce your level of antibodies. Speak to your transplant team about the potential options for you.
Your transplant nurse can give you more information about the level of antibodies in your blood and tell you how long your wait is expected to be.
