Talking with your transplant team
It is important to learn to talk to your transplant team and other health care professionals on your own. You can still bring a support person with you to your appointments, but the healthcare team will expect you to be the one who asks and answers questions.
Most paediatric transplant teams will ask that, as a teenager, you spend at least some of your appointment with the team without your parents. This way, you get some practice at giving and receiving information about your health.
Read the information about communicating with your healthcare team and use the GLADD checklist to help you. There is also a checklist to make sure you have everything you need to go to a clinic appointment.
Meeting your family doctor
You will meet your transplant team regularly, but you will also need to have a regular family doctor for your general health needs as you move into adult care. For instance, if you have a cold or sore throat, you will be too old to see your paediatrician and it will not be appropriate to be treated by your team of adult transplant specialists.
If you have not met with your family doctor in the past few years, consider getting back in touch. For example, you might arrange an appointment for a camp physical or just to check in. This is called a ‘well visit’. If you don’t have a family doctor, you can ask for a recommendation from the people on your healthcare team or from friends or family. You can also get names from the website of the organization that licenses doctors (in Ontario this is the CPSO).
Writing down and asking questions
There is a place in your health journal (either the long or the short version) to write down questions that you want to ask at your next clinic visit. Make a habit of writing down questions as you think of them. It is hard to remember everything you want to ask when you are at your appointment, so looking at your journal will help.
Write down the answers to any of your questions in your health journal too. This way, you will have a record of what you were told and what you may need to remember for your next appointment with your transplant team or other health care providers.
Preparing your health summary
Your health summary will be a very important way of introducing your health history to the new specialists you will meet in the adult health care system.
The summary is normally a few sentences to introduce your transplant history. Naturally, it will include the type of transplant you had, when you had it and the reason for the transplant. It will also include the medications you are taking and any side effects that you might be experiencing. It may also include information any special diet you are on and anything you do every day that is relevant to your health, for example using a catheter or a g-tube.
We have included a sentence-by-sentence example of a health summary below. Once you create your own health summary, practise it with your family or healthcare team before you move to adult health care.
Sample summary
Sentence 1I am 15 and had a kidney transplant five years ago because of posterior urethral valves.
Sentence 2I take tacrolimus (FK), MMF (Cellcept), prednisone and fosinopril and use a catheter every four hours during the day.
Sentence 3I was recently admitted with a urinary tract infection and my antibiotics finished three days ago. I am here to see if my urine is clear and my creatinine is back down.
Now it’s your turn!
Think about and type or write your own three or four sentence health summary.
