Going to your regular hospital appointments can sometimes feel like a drag on your day to day life. You might feel like it affects your attendance with education, don’t enjoy all the questions and tests or the reminders of your heart condition.
You’re not alone if you feel this way but your hospital appointments can also empower you with an understanding of you heart, give you a chance for your voice to be heard and ensure youre heart is working the best that it can.
Meeting with your cardiologist
If you are in the children’s hospital still, there is a good chance that you know your cardiologist well and have had them for many years. It might be that up until now you have sat in the appointment and listened whilst your parent/guardian did most of the talking. That’s absolutely fine, but when you transfer to the adult hospital (which we will go into next) the cardiologist will be speaking with you. So why not get some practise in now with someone you know a little better?
Start asking questions, you can even write your questions on your phone notes and take them in with you if youre worried that you will forget. Your cardiologist is on your team, they want you to succeed so they will think its great that you want to start getting more involved. Theres no need to be embarrassed.
Why do I have to go to my cardiologist for a check up?
The easiest way to get your head around this is to think of a car MOT test!
A car has to go in for an MOT test every year to make sure its running correctly, so do you with your heart. When you go to your cardiology appointment your hospital team can balance your heart function, tweak your heart efficiency and maximise its potential. They cant do this if you don’t go in.
Your appointments are a safe space to ask questions. Its important to understand that your hospital team work hard to ensure that your heart is working the best it possibly can. So that you can live life to the fullest for you. They can’t do that without seeing you – you need to work with them.
Hospital transition and transfer
Hospital transition and transfer is the process of getting you ready to and then moving you from children’s hospital to adult hospital.
This is a big important move for you and we know that it can seem a bit daunting which is why you have the transition part. The part where you get used to the idea and start to learn what will be different and what will be the same.
The transition period can start from when you’re 12 and will last for as many years as it needs to before you get transferred.
The transfer is the actual move.
You need to be in adult hospital by the time you’re 18. Sometimes it can be delayed if you have learning difficulties.
What will change when I move to an adult hospital?
The biggest difference is that you are now the person in control of your heart journey. The young adult who will take a lead in your appointments, don’t worry you can still take your parent if you need them to feel comfortable but your cardiologist will want to speak to you .
You will also notice that the look and feel of the hospital will be slightly different. Less childish, no big bright murals on the wall and toys in the waiting room. You’ll be slightly older so that might not bother you too much, but its always a good idea to bring something to keep you occupied in the waiting room as there wont be anything in adult hospital.
It’s good practise to start taking the lead outside of your appointments too.
Put the date of appointments in your diary, on your phone and tell someone else about them so you don’t forget. Start learning about your medication so you can talk openly and honestly with your hospital team.
Why do I have to move to an adult hospital?
As you get older and see your body start to change, the advice you need, questions you have and care you require will also change. The team you had at the children’s hospital were exactly who you needed as a child, they were speciallists in that area. The team you will be moving to in the adult hospital are exactly who you need at that part in your journey as they are specialists in all thing adult and living with half a working heart.
Don’t see it as just change, see it as progress.
For more information you can check our our ‘hospital transition with half a working heart’ eBook. (LINK)
What will change when I move to an adult hospital?
The easiest way to get your head around this is to think of a car MOT test!
A car has to go in for an MOT test every year to make sure its running correctly, so do you with your heart. When you go to your cardiology appointment your hospital team can balance your heart function, tweak your heart efficiency and maximise its potential. They cant do this if you don’t go in.
Your appointments are a safe space to ask questions. Its important to understand that your hospital team work hard to ensure that your heart is working the best it possibly can. So that you can live life to the fullest for you. They can’t do that without seeing you – you need to work with them.
What will change when I move to an adult hospital?
The easiest way to get your head around this is to think of a car MOT test!
A car has to go in for an MOT test every year to make sure its running correctly, so do you with your heart. When you go to your cardiology appointment your hospital team can balance your heart function, tweak your heart efficiency and maximise its potential. They cant do this if you don’t go in.
Your appointments are a safe space to ask questions. Its important to understand that your hospital team work hard to ensure that your heart is working the best it possibly can. So that you can live life to the fullest for you. They can’t do that without seeing you – you need to work with them.
Written by Lexie Katsaitis
Reviewed by Suzie Hutchinson
Reviewed: 19th June 2024
Reviewed next: 19th June 2027
