Understanding your transplant care and managing your medications

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By the time you start receiving treatment in an adult hospital, you must know all about your diet, medicines and any other care that is needed to look after your transplant.

If this sound scary, don't worry! You​r transplant team and your parents will help you to learn this information gradually as you slowly take on more responsibility for your own care. The PDFs below list the different skills you should develop as a teenager to become more responsible for your own care. Take a look and make some notes of the skills you might need to practise.

Advice for transitioning to adult care: ages 12 to 15 and ages 16 and up

In other areas of this website, you can find information about following a healthy diet at home and when you eat out and managing your medications.

Remembering the names of your medications and what they do

When you move into adult care, you will be expected to know about your medications. Some medications have different names (a generic name, a brand name and short form). For example, it may be easier for you to remember “FK” instead of tacrolimus.

If you find it hard to remember the different medications you need to take, you can always pull out your MyHealth Passport or your health journal and read the names of your medications to a healthcare provider or pharmacist. Or you can use one of our medications schedules and bring it with you to your clinic appointments.

If you have not already prepared a medication schedule, try using one of the schedule templates to record your medications and vaccines. Once you fill it in, look at it often to help you learn the names of your medications. You will need to update your record as your medication changes.

Making it easy to remember to take your medications

Changes to your usual routine or where you are living (and with whom) can interrupt your habits or routines, for example if you go to college or university or to a job where you work shifts.

When your routine changes, work out a schedule and find ways to stick to it. This could mean putting your medicines beside your bed and setting your alarm to wake you up to take them and then going back to sleep.

You might also try other tips such as setting up a reminder in your cell phone. Another good idea is to always have a backup supply in your pocket, purse or backpack.

Renewing your prescriptions

If you need a refill on your prescriptions, most pharmacies need at least 24 hours’ notice. If you need your doctor to re-order your medications because you have run out of refills, you will need to give three to five days’ notice to the pharmacy.

Make a habit of checking your medications and refills before you go to clinic. Then, make a note in your health journal of the medications you need and get a new prescription during your clinic visit.

Insurance coverage for medications

Your parents have probably paid for your medicines either through their health insurance or by filling in forms that will help get government coverage. As you get older, you will need to consider how you will become responsible for paying for your own medications. For example, if your parents have insurance and you stay in school, your medicines will usually be covered only until you are 25 or are finished full-time studies, whichever happens first.

If you need to apply for government funding for medications, you will need to show you qualify every year by filing an annual income tax return. It is a good idea to get familiar with income tax returns, so start doing these when you are 16.

This website from the Canadian Revenue Agency has more information about how to complete your tax return. You can also talk to your parents about how to file your income tax.

Disability coverage (like ODSP in Ontario) pays for medications, but most people with transplants do not qualify for this help unless they have a disability alongside a transplant. The conditions for adult disability support programs are stricter than for children’s programs. If you have any questions about these disability support programs, ask the nurse or social worker on your transplant team.

It’s good to plan ahead so your drug coverage is not interrupted. If you have questions or concerns about this, ask to speak with your transplant team social worker.

Last updated: November 30th 2017