It sometimes seems like I have lain on the same bed in the same clinic off and on for 38 years, waiting for my pacemaker check. Usually, the news is good, but the doctor has been tracking a stubborn ventricular arrhythmia and trying to medicate it. He says it originates from surgical scarring. 

I joke with my friends that if I passed him on the street, he’d say: ‘Mr Schwindt, add another quarter tab of the beta-blocker in the morning!’

The only symptoms I experience come from the powerful meds they use to control it. I resent the fatigue, weight gain, and impotence that go with them but ventricular arrhythmias can be dangerous. So, I take the damn things, these fail, and he’s promised to prescribe something ‘stronger’. 

Across the street at the children’s hospital, some children – accompanied by those parents who can leverage their love to handle their terror – lie near the nexus of life and death. My grandson was there; he had open heart surgery three times before his second birthday. Once, my daughter and her husband were called to the ward in the middle of the night to ‘say goodbye’.

Griffin is a bright, robust 7-year-old now and we count our blessings. Everybody experiences congenital heart disease (CHD) differently. This is the most common birth defect, and they diagnose some with it in utero, others later in life. Many face illness and multiple interventions, and a few won’t survive. 

Most of us end up having surgery, operations that split the sternum – the hardest bone in your body – leaving a long recovery and noticeable scars. Needless to say, people with heart disease also suffer from psychological distress. 

Right now Griffin wants to pull off his shirt to display his scar in ‘show and tell’, but he may not always feel that way – most CHD people experience body image issues at some point. 

And we experience anxiety, always the bloody anxiety:

• Is this body going to work for me when I leave the country? 
• What if I get too tired?
• Am I having heart failure or just stressed?
• How many people die from the surgery?
• Can I face another heart catheterisation?

Under stress, the sympathetic nervous system releases those ‘fight or flight’ hormones that increase heart rate. So, even people with healthy hearts can think they are having a coronary during a classic panic attack, often finding themselves being reassured in a cardiologist’s office.

Those of us with already fast or irregular heartbeats and with plenty of reasons to be anxious (‘This procedure has a 2% mortality rate – sign here‘) can find the struggle for emotional regulation overwhelming.

• Am I doing this to myself? (Dammit, relax!)
• Is my heart in trouble? (It’s not stress, it’s the disease – which is stressful)

I wouldn’t wish it on anyone, but it’s not always bad. I’ve had a full life but, born with an invisible disability, I have a reputation for laziness, cohabiting with another reputation for innovation and productivity. No one knows how I manage both, but I consider it the outcome of a lifetime spent learning ways to get things done with minimal effort. I shamelessly look for the easy way to do almost anything, and, if I can’t, I make up something. 

Serious study of the emotional impact of CHD is a relatively recent development. Attention is now being paid to everything from the acquisition of PTSD (posttraumatic stress disorder) from the interventions to the infantilising impact of hospital gowns.

Congenital heart parents are famously engaged and protective. Many make exceptional advocates. But, like all parents, they have to allow their children to engage in the risks and challenges that accompany childhood and beyond. 

Teenagers have much to sort out as their bodies mature, medical needs change, and their interest in self-care reaches a nadir. Young adults need to go forward with education, work, intimate relationships, and having children themselves. Older adults, a new phenomenon based on 60 years of medical and surgical advances, must address the maintenance and complexity that go with an ageing heart.

We all have skin in the game – something often forgotten with this illness. Let’s remember the grandparents, spouses, siblings, and friends in the mix, providing emotional and practical support.

Here are my tips for everyone

Take care of your health. Yeah, we have medical providers, but I’m talking about controlling stress, exercise (find out exactly how much you can do and then do it), quality food, and rest. The healthier you keep the rest of your body, the easier the heart’s job.

Manage your emotions, especially the anxiety. We understand emotions and how they work. We have the technology to address emotional struggles. It could be a therapist, a website on CBT (cognitive behavioural therapy), or any other approach that allows you to face your fears. If you don’t take on anxiety, you cannot fully engage in the joys of life.

Communion matters – we draw strength from our supports. And by these, I mean everyone: professional but mainly our family and friends. Isolated people have poorer outcomes. If my self-care flags, it’s my wife who kicks my butt. And I am motivated to remain healthy because Griffin needs his grandfather with CHD.

Exercise agency. Ask the questions that need asking, cooperate with treatment, and be the expert on you or your loved ones. Can you explain your medical history? Can you show up to the emergency ward with reports in hand? Do you know all your medications? This will ease your anxiety and reduce the possibility of medical error.

Live life to the fullest. CHD people are at risk of underachieving, often based on false assumptions about their limits. Don’t let that underachiever – or ‘under-liver’ – be you or the person you love.

Richard Schwindt, MSW, RSW, is a social worker and writer. He has worked in a variety of clinical settings in Toronto, Sioux Lookout, and Kingston, Canada