I feel crap

Fontan heart and anxiety

The first thing you need to know is that there's a lot of research happening right now about anxiety and having a Fontan. It's important to know this, so you understand it's normal to have rough feelings and feel crap at times. 

If you don't know this can be part of having a Fontan then you won't know to ask for help when you really need it. 

Just like you need a blood test or an echo, you might need a check-in with someone who can help you with how you feel.  You're entitled to it as part of your cardiac care.

Here's a news report on some research that may help you understand that you are normal to experience anxiety:

Fontan heart and depression

Weird crap

If you've had a Fontan, sometimes you just feel weird for no reason.

Like your brain feels tired, your body feels tired.

You have trouble sleeping.

You're getting headaches.

Or you might have really aching legs. (Your leg pain is real by the way - read this.)

Some days it's hard to concentrate or you can't keep still. You feel restless, your teachers get annoyed because you're not engaging in the class or lecture activity.

You can't be bothered coming to the dinner table so the family get mad with you.

 

Don't beat yourself up over these things. You're doing the best you can. With your family and other close friends, sometimes a straightforward explanation could work: "I've had a big day at school which has made me tired. Would you mind if I had dinner in my room and came out later?"  Positive compromises can make everyone feel okay.

Heart scar with Fontan surgery

Your scar

Every day when you have a shower your scar reminds you that you have a Fontan. There's no avoiding it and that might feel upsetting. 

Chances are you've been teased or even bullied as a little kid when someone saw your scar. That's made you very private and a bit scared of anyone else seeing it.

 

Bullying at a young age can affect people into adulthood and is cruel. Bullies give you a distorted sense of the truth so don't let them capture your mind. Bullies are a waste of space.

Adolescence and onwards is when you can get body-conscious. If that's you, wear your high collared shirts, T-shirts and dresses. Choose to hide your scar or show it to the world. Both are fine. It's your body and you need to feel comfortable about your body decisions.

But one day, you will feel safe about certain people seeing your scar. It might only be one person but that's okay.  

As you form your trusted friend group and start dating, you should find that true friends don't worry about things like scars. Watch what Matty says about scars.

Drinking, smoking, drugs

Let's start with the obvious. The perfect scenario with a Fontan would be don't drink, don't smoke, don't do drugs.

Let's get real. It's unlikely you will skate through life without wanting to drink alcohol or being offered drugs or a cigarette.

 

There are physical impacts caused by addictive substances so read up on the risks (including effects on your meds). Then add in the fact that your heart already works hard for you. Be kind to it.

If you drink, do it so you enjoy it without getting sick. Stay with the one glass as long as you can so people don't keep offering you more. Work out your limits beforehand. Unless you're on fluid restriction have water between each drink. Avoid energy drinks, all that caffeine makes your heart work way too fast! Get your own drinks so people don't add stuff you don't know about. Have one trusted friend who keeps an eye out for you if you look unwell.

Though you may be offered drugs, please say no. They stuff you up, body and mind. One of the worst things is that drugs can alter your mood, as can alcohol. So if you already feel unhappy, drugs will ultimately make you feel worse.

 

If you do take drugs, know that there are medical experts who will do everything they can to get you help to stop. Don't be frightened to tell them. In most countries, people want to support anyone who puts up their hand to say they're struggling, especially if they know drugs impact your heart.

The same with cigarettes. They wreck your lungs

big-time and it's hard to reverse the damage. Like drugs, seek support to try and give up smoking. Your life depends on it.

How to drink safely with a Fontan
Having a Fontan should not affect your sex life

               Love

Love, love, love. It's complicated for everyone, let alone when you're born with a congenital heart condition!

Falling in love is a great thing but breaking up is rubbish. Like most people, both will happen to you many times!

If you have a Fontan the hardest thing when you start dating in your teens might be talking about your heart condition and showing your loved one your scar. Dating might feel hard. You could be tired and not feel like going to that party. Or you might feel anxious getting intimate because of your scar.

 

If someone is nasty about any of these things, then they're not worth going out with. Dump them (nicely) before you get hurt.

As you enter young adulthood, sex, marriage, children enter the equation. You should embrace a good relationship and tell your partner about your heart circulation in detail. You have as much right as anybody to enjoy a permanent relationship. You don't have to ask yourself that impossible question "What if I don't live to old age?" No human knows how long they'll live. All you have to do is make sure your partner knows the facts about your Fontan. 

If you're considering birth control, talk to your cardiologist about the best choice for your body. You will also need to make sure your choice is suitable for the medications you already take.

There are women who have given birth with a Fontan. You need to talk to your doctor about the risks. But don't dwell on it unless you're really contemplating pregnancy. Enjoy the relationship you're in and face things as a couple when these questions arise. True love is about sharing the good and the bad and making decisions together.

Parents

Mothers and fathers go through a lot when their child needs a Fontan. The first stage of a Fontan often takes place when you were a tiny baby. It's a huge responsibility to care for an adored baby who's had open-heart surgery. 

But it can feel exhausting if you are over-mothered and fathered. When you get to your teenage and young adult years, it's time to help your parents understand that you need to start taking responsibility for your own heart health. 

You should be asking more of your own questions when you visit health carers. Take a list of questions that are bugging you. Make sure the experts explain technical terms to you. Ask what each medication is for. Start to organise your own appointments. 

Keep including your parents because if you don't they'll sulk! But gently teach them that you can gradually begin to take charge of your own very precious heart.

Parents should help you take responsibility for your own Fontan heart health

Mental Health

Conquering CHD interview Meghan Didier.

 

She talks candidly about her mental health challenges from when she was young. She also shares great tips, including starting to advocate for your own mental health and how to approach your daily life.