Though you've spent time in hospital and been to countless doctor's appointments, you may have only half-listened as a kid. Besides, a lot of those doctors talked mostly to your mother and father even though you were the patient.
But now's the time to make sure you have a grip on Fontan facts yourself. That you know a little more about your own body and how your own heart works with a Fontan circulation.
This video gives a basic explanation of a Fontan procedure. There are a few variations to the surgery so ask your cardiologist if you would like a detailed explanation of how yours worked.
Make sure you know the name of your congenital heart condition and what it basically means. Understand how the Fontan makes your body work.
Heart conditions that may have required a Fontan include:
Hypoplastic left heart syndrome
Unbalanced atrio-ventricular septal defect
Double outlet right ventricle
Double inlet left ventricle
Pulmonary atresia with intact ventricular septum
Insist on a planned transition when you move from treatment at a children's hospital to an adult hospital. Make sure all your records are transferred (not just cardiac stuff) and that you can access care for your mental health too if you feel that could help you.
Don't tolerate people, even medical people, who don't take your condition seriously because you look so normal. Remember that some general consultants and paramedics may not have seen your sort of condition. They should work closely with your cardiologist.
Understand that as you get older you might get extra tests like liver function, protein or stress levels tests. Don't panic and think it means you're getting sicker. It is just like getting a car serviced, they're checking your mechanics are well-oiled because you're continuing to grow.
Tatts, piercing, dentists -
if you're thinking of getting inked or a body piercing, ask your cardiologist about precautions first. Go to a reputable business that has good hygiene and keep an eagle eye out afterwards for any sign of infection.
Do go to the dentist regularly. Infections can creep in through the gums and potentially affect your heart. Ask your cardiologist if you need antibiotics before your visit.
If you ever feel unsafe or suicidal, ask for help. Make sure you find someone who gets you and how you feel. You don't have to stay with the same counsellor if you don't click with them but make sure you see someone. And don't hide these feelings from those closest to you. They want to help you more than anyone in the world. Their hearts would break if they couldn't help you.
Do exercise however you can. Go outside and don't cut yourself off from friends.
Get a pet. Don't google cardiac stuff more than you need to.
Know that you matter to a whole heap of people even when you don't think so.