Communicating with your healthcare team after a liver transplant

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Healthcare professional comforting teen patient

Tips for talking with your healthcare team

Talking to doctors or other healthcare professionals might feel hard at first when you're not yet an adult. For this reason, Dr. John Reiss, a health psychologist in Florida, developed five tips to help teenagers feel more comfortable talking with members of their healthcare team.

Tip 1: Give information

As a teen or young adult, you are responsible for giving your healthcare providers complete and detailed information. It is important to be honest. For example, if you have not taken your medicines when you were supposed to, let your doctor know. If possible, let them know why you didn’t follow the plan. Tell them also when you did not drink your total fluid allowance and when your blood pressure was high and how high it was.

The more your transplant team knows about you, the better they are able to work with you and come up with a treatment plan that works.

You can use a medical diary or your health journal to keep track of your symptoms or side effects of medications. You can also use this journal to help tell your doctor about these symptoms or problems.

Tip 2: Listen and learn

As a teen or young adult, you are responsible for listening to and remembering what health care professionals tell you. Most people can remember only two or three things that doctors tell them, unless they write it down. Take your health journal or diary with you when you visit the doctor and write down the information you need to remember. If you feel comfortable having a family member or very close friend with you, this may also help.

Tip 3: Ask questions

Ask the questions you have about your health and keep asking until you understand. Doctors want their patients to have the information they need to be healthy. They are happy when their patients take the time to think about their questions ahead of time and bring written questions to their clinic appointments.

  • Before your clinic visit, write down all of your questions.
  • Bring your list of questions to your clinic visit.
  • If you have questions that come up during your clinic visit, write them down.
  • Make sure that your health care team answers each question on your list.
  • If you don’t understand an answer, ask again!
  • Repeat the answer using your own words to make sure that you really understand.
  • Some doctors let their patients send questions to them in an e-mail and respond the same way. Maybe you could ask your doctor if this would be possible.

Tip 4: Decide

Play an active role in deciding what needs to be done next. Don't agree to a plan that you are not willing and able to follow.

Tip 5: Do

Play your part! Follow the plan!

When to contact your transplant team

There might be times when something goes wrong as you adjust to your new transplant. When this happens, it’s very important that you can contact your transplant team quickly. Call your transplant team in any of the following situations.

  • You have a fever (a temperature higher than 38°C (100°F) when taken by mouth) and/or flu-like symptoms (chills, nausea, diarrhea, tiredness, headache, body aches and pains). Contact the team urgently if you have these symptoms while your central line (PICC or CVL) is still in place.
  • You have vomiting or diarrhea that is so severe that you find it hard to drink enough fluids or keep medications down.
  • You have forgotten to take your medicines more than once.
  • Your stool (poo) is black or your vomit looks like coffee grounds.
  • You feel pain or a burning sensation when you urinate (pee).
  • You cough up blood.
  • You experience chest pain or shortness of breath.
  • You are passing more stool than usual.
  • You look jaundiced (the whites of your eyes are yellow).
  • You have come into contact with someone who has chicken pox – this only applies if you did not have chicken pox before your transplant or if it happens in the first six months after your transplant.
  • You develop a cold sore, shingles (a painful, blister-like rash) or any unusual skin rashes.
  • You have an accident or injury that may affect your transplant organ, such as being hit in the abdomen.

Make sure that you have the contact numbers for your team and keep them in the long or short version of your health journal. Also make sure you know how to leave a message for your team and how to contact them in an emergency. For example, you may have a different contact person on evenings or weekends or when your regular contact is on vacation. Write down these contact details too.

Healthcare professional comforting teen patient

Treat your transplant team as part of your support system

Your transplant team is your best source of information and support for you around your transplant.

They want to make sure they answer all your questions about your transplant and its treatment. When you have answers to your questions, you have all the information you need to make informed decisions about your treatment plan and take care of yourself at home.

If you don't have any complications to report, you might think your doctor is too busy or your question is not really that important. Sometimes, you may feel more comfortable asking the nurse your questions. This is ok!

Your transplant team can also offer help with any questions, worry or stress if you have a regular need to speak privately to someone outside your family or circle of friends.​

Last updated: November 30th 2017