Adult Care Transition
The time when you move from your chidren's cardiologist to an adult cardiologist is as important as anything you do when you hit adulthood. Your doctor should be helping you practice for this when you're 16 at the latest, by talking more directly to you than your parents and starting to check you understand things. Adult care transition happens around 18 but it does vary depending on how your particular medical facility is set up. It kind of happens at the time when you're at your busiest - leaving school, finding work or living away from home for the first time. It's probably the last thing you want to think about but it's really important.
Okay, your parents are weirdly emotional about your adult care transition. They've been so used to asking all the questions at your appointments, reminding you to take your medications, get your blood tests, go to the dentist. It's like THEY need the comfort during this transition. Be kind to them. They have managed some critical times for you. But now is the time to gently teach them that they need to let you take charge of your own heart health. And never forget that if you are struggling, they will know a lot about your Fontan and also be your best advocates if you're not feeling in control. If you want them to come with you to any appointments, that's also fine. You will know when you're ready to go on your own. Or you might want them at some visits and not others.
You might also have mixed emotions about transition. You've known some of your health carers for a long time. They're like friends and you have to say goodbye.
You're used to the surroundings of the children's hospital and your cardiologist's rooms. You know the drill.
You would much rather be thinking about learning to drive and going out with friends instead of thinking about this stuff. But in your case, moving to adult care is part of you becoming an adult. It's another sign of your growing independence.
It's your body
First up, be very clear that this is your body and your heart. You have the right to ask any question and request a better explanation if you don't understand something. You have the right to ask why you are having a test and what your medications do. You have the right to ask for a second opinion or ask for a translator if you don't understand the language being spoken. You have the right to question a general practitioner, paramedic, psychologist or allied health person if you don't think they understand the complexities of your Fontan.
You might not click with your new cardiologist. It happens and you must discuss it with the cardiology team. It's likely to be a long relationship so you need to feel comfortable with the person treating you. In some adult clinics, you may not see the same cardiologist so make sure you ask how this works so there are no surprises for you.
All of this doesn't mean you're going to be some sort of aggressive patient who storms in slamming your fists on the desk. It just means that when you're feeling rushed, overwhelmed and overloaded with information, you know that it's okay to pause a moment and have things explained better. Especially if you're also in pain and finding it hard to concentrate. A Fontan is a complex procedure so you deserve good and kind information.
As you start taking responsibility for your own health, you might find apps handy to keep track of when to take your meds, blood test reminders, doctors' appointment times and test results. You can also use them to enter anything you observe about your own body, like which days your legs ached or the day you felt really breathless. That way you can observe patterns in your body's behaviour.
Apps are good for recording questions for the doctor. You can enter them quickly when you think of questions and also keep notes of the answers you get.
A few apps you might like to look at are:
UpBeat - HeartKids in Australia has released the UpBeat app with an info hub, medical summaries area and the ability to upload documents. It could be very useful if you are transitioning to adult care. Read more about it here
Medisafe - that has reminder alarms for tablets plus refill reminders, an appointment manager, logs for recording information, etc.
My Chart - another great app that lets you access your health information, stay in touch with your doctor and manage your appointments. It works best if your health care providers can be linked to the app to provide your information.
My Heart Anatomy - this one is cool because it's got 3D imaging of a normal heart. When your doctor talks about superior vena cava or mitral valve or coronary sinus you can look at this app and it shows you exactly where these bits are and a basic description of what they do. You can also press Hide on the menu and it takes you deeper inside the heart. Write down any terms you don't understand when you're at your doctor or get the doctor to write them down for you.
Browse your app shop for these apps and ones like them. Ask your doctor if they know some good ones too.
Your Mental Health
As you grow older, your mental health becomes as important as your physical heart health. You are normal to feel anxious and worried about the future when you've had a Fontan. It is normal to want to ask questions about life expectancy. It is normal that you feel not necessarily lonely, but 'alone' in dealing with a complex cardiac condition. That's because not many people around you will have a complex congenital heart condition and won't even get what you deal with. On top of that, you look so normal!
In transition, ask for access to someone who can support your mental health. As Fontan patients live longer and longer, research is showing that you need and should ask for support for your feelings as well as your heart function.
Get yourself organised before you go to your medical appointments. When you first transfer, check that all your hospital records have been transferred, even the time you went to emergency with that broken toe! At every visit, make a list of questions you want answered. When you first go on your own, you might end up asking the tough questions you've always wanted to know but haven't felt comfortable asking in front of your parents. Things about sex, birth control, drinking, sexuality, tatts, body piercing, how long will I live. Some of the cardiologist's answers might feel confronting. If it throws you, please talk to someone. You may have misunderstood an answer. Ask the doctor to write down any terms you don't understand so you can look them up later. Some doctors are so focused on technical terms (it's their daily life), that they forget their answers might sound frightening. They don't know the real you, and their answers might feel harsh or depressing. That's why you must talk things through with others if your appointment left you anxious. Or ring your doctor's office and tell them that you need something explained again. A good doctor won't want you worrying for months until your next check-up and should call you back.
Check some money facts
Boring topic, but you need to consider insurance and care matters as you grow into adulthood.
First up, carry notes in your wallet that describe your condition, the meds you take and contact info for your cardiologist and family or good friend. You can also buy ID jewellery if you prefer. This Australian site shows examples, but there are lots of other sites too. If you travel to another country you might find it hard to get travel insurance because you have a pre-existing condition. It might even affect the choice of countries you travel to if they charge a fortune to see a doctor or enter their hospital in an emergency.
Ambulance insurance is definitely worth getting. In Australia for example, ambulance insurance is reasonably affordable but without it, a trip in an ambulance is a huge cost.
You may be eligible for some medication discounts depending on your condition. Check with your doctor to see if you qualify. It's possible you need to get your own health card and that you're no longer covered by your parent's health insurance.
Don't fall off
Whatever you do, don't fall off the system. Of course you don't feel like going to cardiac appointments when there's so much going on around you. Blood tests and echos are a pain in the neck. Even taking your meds after a good night out can feel like a chore.
You need to keep up your dental appointments as well and check you don't need antibiotics before you visit. If you get an annual flu vaccine, add it to your calendar.
Your appointments, tests and medications exist for only one reason - to keep you in the best possible health and check if anything needs adjusting or fixing. Yes, it's a pain, but you'd never forgive yourself if you got sicker than you needed to because you hadn't been checked at the right times.
The ability to live with a full life with a Fontan has never been greater. And you deserve to live that full life.
It's 33 minutes of an optimistic, realistic and honest speech by Meghan Roswick about her life with Hypoplastic Left Heart Syndrome and the Fontan. It will teach you so much about the things you really want to know.