Managing your life while waiting for a kidney

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Teen boy lying in bed

Waiting for a transplant can be very stressful. You never know when exactly the call is going to come to tell you to come to the hospital. In the meantime, you can feel like your life is on hold.

Some people are on edge every time the phone rings when they are first put on the list. If you have been waiting a long time for a transplant and are feeling unwell, you may be wishing to hear from the hospital and be disappointed when a phone call is not from the transplant team. Equally, you may be looking forward to an event at school or a family party and wondering if you have to miss it if you are called in for surgery.

Managing your health

When you are coping with chronic kidney disease (CKD) or end-stage renal disease (ESRD), you may notice that:

  • you have less energy
  • you are sleeping more
  • you find it harder to concentrate at school
  • you are not as hungry
  • you feel like vomiting.

It is important to talk to your nephrology (sometimes known as your CKD or dialysis) team about all your symptoms. Sometimes your medicine doses can be changed a little to help you feel better. If you are not yet on dialysis, your team may decide it is time to start it.

If you are on dialysis and still feel unwell or tired all the time, especially right after dialysis, talk to your dialysis team.

It is really important to keep communicating with your team. Make notes about how you feel each day and share them with your team at your next clinic visit or dialysis session.

When you are experiencing symptoms of end stage kidney disease or on dialysis, the best thing that can happen is to get a new kidney. A successful transplant will make you feel a lot better.

Keeping a regular routine

The best thing you can do while you are waiting is to live your life as normally as you can. Plan ahead as you usually would. Get involved in family, school and community activities as much as you are able to. You may wait quite a long time on the list and really regret not getting involved if you say no!

Arranging how to keep up with school work

You might find it helpful to talk to your guidance counsellor at school during this waiting time to let them know that you are on the transplant list. For example, they will need to know that you will need to miss school for two or three months once you have your transplant surgery.

You and your guidance counsellor can come up with a plan to help you keep up with your classes and school work at the time of transplant. Your school might send work home with a parent or friend or be able to send work out by email.

Another option is home instruction, where the school will send a teacher to your home for one-to-one teaching for four to six hours a week. The hospital may also have teachers who can help with school work.

Last updated: November 30th 2017