Debra North – CHD and heart valve disease

Debra North is an American Heart Association Heart Valve Disease Ambassador who writes in honor of Heart Valve Disease Awareness Day.

It’s February 2021, Heart Month during an unprecedented time. Not only is the world dealing with and fighting against COVID-19, we are also facing other health issues that don’t care about a possibly deadly virus.

I didn’t think that I’d have to think about my own heart health that much at this point; after all, my heart journey has been varied, checkered, and frankly a roller-coaster ride for the last 15 years. COVID-19 has been more on my mind than my heart rhythm or my heart valve function.

As a lifelong heart patient who was born with a heart defect almost 46 years ago, my congenital heart defect (CHD) took center stage when my defective mitral valve began to fail decades ahead of schedule. I’d always been told that I wouldn’t need surgery until I retired, basically, but there I was, 30 years old, a high school teacher with every symptom of heart valve failure you could imagine: shortness of breath, fatigue, lightheadedness, and arrhythmia. On the advice of a wise friend, I journaled every symptom that I thought might be significant, which my cardiologist appreciated.

I had surgery to repair my valve in 2006, but the repair was what I called my “10-year-extended warranty.” I had surgery to replace that valve ten days shy of my tenth surgery anniversary because the repair just was not holding up anymore. The replacement valve, a tissue replacement that for most people can last up to 20 years, failed within months, and I had a mechanical valve replacement shortly after Thanksgiving 2017. My husband lovingly calls my most-recent post-surgery life my “ThanksLIVING.”

Other than making trips to our not-so-local Coumadin Clinic to check my INR and adjust my dosage for new medications or any (temporary) lifestyle changes, I haven’t had to think about this valve replacement so much. Yes, I can hear the steady clicking every now and then, a reliable reminder that I’m alive. COVID-19 hit, and I adjusted my lifestyle to keep my family, community, and myself safe.

But heart valve disease doesn’t care how old you are, or if there is a pandemic. We hear the commercials from medical professionals imploring us to seek help if we are having a medical emergency. I still had to go in and have my echocardiogram done just a few weeks ago in January.

My cardiologist and I have been together for over 20 years, when I was a 25-year-old first-year teacher who had just gotten her own health insurance (yay!) and he was a young doctor just starting out his own private practice. It didn’t take him very long to realize that I’m not a typical heart patient. We patients with CHD are complicated by nature; our unique heart defects can be challenging for many cardiologists. Now that people with CHD are living longer than before (thanks to advancements in medical technologies and treatments), we present new challenges to cardiologists due to aging, yet defective hearts. We aren’t the often-imagined picture of a “typical” heart patient who is older and has heart issues due to age or a long lifestyle of habits that have now affected the heart.

I saw my cardiologist for the follow-up to said echo, and he was concerned. Even though his N95 mask covered most of his face, I could see the slight worry in his eyes. I think I replied with, “Goody,” sarcastically (by the way, I tend to be really sarcastic; it’s a coping mechanism I’ve developed as a young person). The first time I replied so flippantly back in 2006 with the first negative report, my cardiologist reacted sharply, not understanding my sarcasm. Over the years, we have developed a good rapport and we can joke with each other. But I digress. I’ve only had this mechanical valve for almost three-and-a-half years, but my cardiologist is concerned about something called pannus. Simply, pannus is the scar tissue that can grow over an implanted device, such as a heart valve replacement. It’s not common, but neither is my case with three valve surgeries in a little over ten years’ time. According to the American Heart Association, the tissue growth (pannus) can impede the valve’s function which can potentially lead to further complications.

I will need another type of echo, a transesophageal echocardiogram (TEE) in June to determine if there is indeed any pannus growth.

Meanwhile, like many others with congenital heart defects who will require a lifetime of care through a skilled cardiologist, I will monitor my symptoms, journal any new changes, and call my cardiologist immediately if anything significantly worrisome arises. All I can do in the meantime is to keep myself as healthy as possible and live with “ThanksLIVING.”