COVID-19 and the Impact on ACHD Patients

I can’t be the only person who wakes up every morning and thinks to myself, “Maybe it was just a bad dream? This can’t be real life!”

The SARS-CoV-2/novel coronavirus/COVID-19 crisis has completely upended our way of life. It’s all anyone is talking about. Where I live, in California, our entire state of 39.56 million people are now on a “stay at home” directive in an attempt to decrease the sharp upward curve of severe cases that could overwhelm our healthcare systems. Schools are closed, all businesses besides essential services are closed, and our legendarily clogged freeways are now actually functional.

There is a collective anxiety throughout the world that is palpable on social media, mass media, and in everyday conversations. This anxiety had caused some strange behavior, like the hoarding of toilet paper, and frustrations in many.

Most people are newly experiencing the uncertainty of the future, the fragility of our mortality, and the lack of resources/data to help them navigate this situation.

We, the adult congenital heart community, are familiar with this experience. It is what we’ve known throughout our lives with our congenital heart disease. We have often felt uncertain about our future, we have been painfully aware of our mortality from a young age, and our field is new with limited resources and data.

This crisis is either well tolerated because we’ve navigated similar threats to personal safety, or additive, making us feel more vulnerable than ever before. I think most of us are taking this very seriously because we know what is at stake. Many of us know what it’s like to be critically ill on a ventilator. To fight for our lives. It’s something we don’t want to experience if we can avoid it.

There are so many questions. I’m personally fielding over 100 questions each day at Stanford.

What is the risk for my CHD? What will happen if I get it? Will I have access to testing? Will the potential treatments be safe for me? Is it safe for me to go to work?

The answer is…

We don’t know.

I say this as an ACHD nurse practitioner and an ACHD patient: We. Don’t. Know.

There just simply isn’t any solid data on the risks of COVID-19 with CHD. However, the CDC has listed congenital heart disease as a potential risk factor for complications.

What I DO know is that ACHD providers and advocates are working together, throughout the country and the world, to learn from each other and share knowledge.

What I do know is that we’re erring on the side of caution, assuming all CHD patients are at risk, and are doing everything we can within the confines of regulations to help keep our patients safe.

What I do know is that we’re all in this together, and only through collaboration and compassion will we find our way through this.

I wish I could sit here and type out clear and direct medical advice for each one of you, a clear plan of care, and a clear picture of how things will go—but I can’t. Each region is different, each CHD history is different, and I suspect each reaction to this virus will be different.

I got frustrated with my husband the other day about something related to the COVID-19 situation, and he said “I don’t know, honey. I’m trying my best. This is all new to me.”

I remembered that it’s new to everyone, and having grace and patience for those around us is imperative to our success. We’re all trying our best under unprecedented circumstances. Let’s all be a little kinder to each other.

When the unpredictability and anxiety of it all overwhelms me, I take a deep breath, I feel rooted to the earth under my feet, and I remember that in this moment I have the great fortune of being healthy. All we truly have is the present moment; please don’t forget to find gratitude for yours.

My heart is with each one of you and I sincerely hope that you stay safe, remain informed through reputable sources, and find peace in this new era of stillness.