It's certain that you're sick of the conversations about your heart when you were younger. Being called a heart warrior, brave, full of courage, a little soldier. You probably wish your parents wouldn't post your baby photos on social media when you were in hospital. That they didn't talk about your Fontan in front of their friends or rush to the teachers whenever they thought you shouldn't take part in a school sport or camping excursion.
You want to be treated like a normal young person. You don't want to be reminded of your heart condition every day because you want to fit in with the people around you. You don't need others to remind you of your Fontan all the time because you think about it enough already.
"Stop fussing over me," you yell!
You might have lots of caring friends and family so you may not feel lonely. But you might feel alone. Because it's impossible for anyone to know what it feels like to have your cardiac condition no matter how hard they try. Feeling alone is tough.
You're dead right about all these feelings. It's time to take charge of your own body, know the facts and learn how to keep yourself healthy. If you start to do this bit-by-bit, it won't feel so overwhelming. That's the best way you can feel like everyone else.
We hope the videos and information on this website show you other people going through the same experiences as you. Some of these people have Facebook pages. Maybe you could follow them. On this site, there is a page with useful links.
When everything feels too much, reach out to someone you trust or a professional. You deserve the best of care.
This is all about you cos it's your life, your body, your heart.
As you've grown older with your Fontan, what's the betting you've googled:
Life expectancy with a Fontan
What's the oldest someone's lived with a Fontan?
Can I have kids with a Fontan?
Well here's the thing, It's perfectly healthy to ask these questions and many more.
It means you care about your future.
The problem is it's sometimes hard to find the answers. You can't get a straight answer with your questions because none of us can predict the future. Like who would have predicted Coronovirus? Or that a volcano would erupt in New Zealand killing tourists?
That a pile of explosives would erupt and kill residents in Lebanon?
At the same time, these comparisons feel trite. They probably make you angry. Because you are dealing with a complex heart condition and your reality is your truth. You don't need or want to hear platitudes and lame comparisons. They are meaningless to your reality.
You deserve acknowledgment that what you're dealing with is hard and often feels unfair.
The positive part of Fontan surgery is that the smartest people are attracted to work on your type of surgery. Top researchers want to investigate the intricacies of your particular heart condition. So though
no-one can guarantee the future about anything, you have the best people working in your corner to keep you living life. They work across the globe, sharing the insights they learn.
Technology develops at a dizzy pace - just look at how fast Apple and Amazon bring out improvements. In a similar way, heart researchers work every day on new improvements for your quality of life.
If you try not to worry about the future, that is healthy for your heart and your mental health. Sometimes that will feel a big ask.
Plan to live forever and leave your best footprint on this planet.
Be kind to yourself when you feel angry, sick, frustrated, left out. Of course, you will feel like that.
You've been through a lot and you've been told to be careful since the day you were born.
Stay sensibly careful and live your life.