Strep-Heart: My Journey with Endocarditis - Part 1

On a warm and windy day in August 2019, I am driving down the stretch of highway in Colorado that is perched on Green Mountain and overlooks the skyline of Denver. With the windows down and sunroof open so that I can feel the cooling breeze on my face and the back of my neck, I drive with purpose. My destination was determined by a phone call I received earlier in the day from my primary care doctor: "Go to the hospital and check yourself in—lab results indicate there is an infection in your blood." In this moment, I’m not worried... if anything, I am looking forward to the IV antibiotic waiting for me that will provide some relief from this awful fever.

A few days before, my quick-thinking primary care doctor had suggested blood cultures after I presented with a fever in his office. “Probably the flu,” he had said, “but you have a heart condition, so let's check your blood just in case.” He knew about my two open heart surgeries as a child, at ages two and five, to repair my heart defect. He knew that in 2003 just before I turned 21, my heart had started to misbehave, angry from all the trauma it had once endured, and that I had had a pacemaker/defibrillator device (ICD) implanted in my chest to treat irregular heartbeats and that I relied on that device to beat for my heart.

As someone born with CHD, I heard my whole life about the risk of bacterial infections that can spread to the heart and cause endocarditis. I knew about the importance of good oral hygiene in preventing such infections. I took antibiotics before dental exams and scheduled regular check-ups with my cardiologist and primary care doctors. In my mind, I did all the right things, so the threat of endocarditis seemed remote to me. In comparison, I spent much of my adulthood with CHD more concerned with the possibility of another heart surgery or making sure I had a good job with medical benefits to cover my expensive health care. Besides, bacterial infections could be treated with antibiotics, right?

Once at the hospital, I quickly learned that the bacteria causing my relentless fever was Streptococcus anginosus, a common form of strep bacteria. What I didn’t know then with any certainty until a few days later after diagnostic imaging, was that the source of the bacteria was a vegetation on the atrial lead in my heart. Although the bacteria in my bloodstream could be treated with antibiotics, those antibiotics would never be able access the bacteria that had invaded my atrial lead.

What this meant, I began to understand, is that the lead provided a safe harbor for the bacteria to live indefinitely and if the lead remained in my body, the infection could always come back. This could cause a myriad of problems, including irreversible damage to the tissues of my heart. Removal of all foreign material in my body was the only way to get rid of my infection completely. This included the atrial lead that was infected, the lead in my superior vena cava, the lead in my right ventricle, and the ICD (implantable cardioverter defibrillator) device itself.

At this point these leads in my heart had dutifully performed their job for over 16 years; they had reliably given my heart more than 600 million beats.

I immediately knew in my gut that this was not good. The somber looks on the faces of the epidemiologists who diagnosed me with endocarditis told me that this was serious. After speaking with cardiology, I learned that successful removal of my leads would take a very experienced expert. Scar tissue had formed naturally around the device's leads, meshing indistinguishably with my heart. Within a matter of a couple days, I went from arriving at a hospital just for IV antibiotics to facing a complex multi-step course of treatment. The process would involve first removing the embedded leads from my heart, living with an external pacemaker until the infection cleared up, and finally an attempt at implanting another ICD and lead system back into my heart.

That initial stay at the hospital on that summer day in 2019 launched what would be a six-month journey that took me to three different states and four hospitals to fully and effectively treat my specific endocarditis. I am incredibly blessed and grateful to have survived it.

But I didn’t always feel this way.

Growing up with CHD, I learned to expect the unexpected. But this diagnosis felt completely unfair. I was doing all the right things to take care of myself. Despite my attempts to understand how this happened, there was no explanation for how I contracted this infection. Anger welled inside of me. Overcoming endocarditis was as much of a psychological journey as it was a physical one. I went through a full-fledged reckoning with the very real possibility I may not survive.

I believe it is nothing short of a miracle that I am here to share this story. Today, I have finally reached a place of acceptance and gratitude for my experience. In my next blog post, I will talk about how I got here.