Strep-Heart: My Journey with Endocarditis - Part 2

In my first blog post, I wrote about my experience being diagnosed with endocarditis in 2019. You can read about it here.

What no one talks about, when you have a pacemaker or ICD (implanted cardioverter defibrillator) implanted, at least in my experience, is that living with technology in your body comes with liabilities. When I was diagnosed with endocarditis at 37 years old, I received a crash course on this. In my case, my leads needed to be removed because they were harboring harmful bacteria and removing them would not be easy.

My leads were 16 years old, putting me squarely in the “ancient” category of lead lifespan. This meant that extracting them from my heart came with a risk of tearing heart tissue during removal. I could die within minutes without emergency intervention to repair the tear. Therefore, any attempts to extract my leads would require the procedure to be performed in a cardiac operating room so that an emergency open heart surgery could happen to save my life—should this be needed during the extraction.

I wanted reassurance that my heart would be safe from pulling the lead wires out. Of course, this could not be guaranteed.

Removing the leads and ICD also meant I would need to be kept alive with a lead coming out of my neck, hooked up to an external pacemaker, until the infection cleared up and new leads and an ICD could be implanted. Successful lead removal was just the first hurdle.

There was no clear path forward for my situation. Some of the decisions I faced were very heavy: whether the risks of removing the leads outweighed the benefits, who should remove them should I chose to go forward, and how long could I wait to have them removed. The weight of these decisions was enough to last a lifetime.

Up until this point, I naively never considered the potential complications of the technology implanted in my body because mostly I just always felt grateful for it. I am so grateful to have access to some of the best healthcare and medical device technology in the world. What I learned during this time is the importance of being your own advocate in your healthcare. I asked a lot of questions and then I asked some more. I stayed up late researching and gathering data. I absorbed information, processed it in my own way, and ultimately made decisions based on what “felt” right.

I believe it is not the challenges in life that define us but how we face them. Even though it took me a bit to come around, I decided to face lead extraction head-on. Despite the risks, I knew removal of the leads was my best chance at regaining my health long-term. However, that did not mean it would be easy. What transpired in the days and weeks after being diagnosed with endocarditis was a flurry of activity that soon catapulted my life into full-time management of my health.

Ten weeks elapsed from the time I was diagnosed with endocarditis until I was able to have the lead extraction procedure. There were IV antibiotics and weekly appointments to the infectious disease clinic, regular TEEs (transesophageal echo) to view if the infection on the lead was changing, numerous phone calls with my wonderful healthcare team, note taking, researching, incredible amounts of paperwork, and a lot of waiting. Once the leads were removed after that 10-week mark, it was still two more months until the new ICD system would be implanted.

Meanwhile, life had to go on. Somehow, I had to live with the reality of the situation without being tormented by it. Some days I succeeded, but many days it was overwhelming. An emotional wound was created at the same time the physical one was created.

I had recently started a new job that was incredibly demanding. The psychological pain I was experiencing during this time was something I had to conceal every day I walked through the door. I tried my best to not fall apart.

I learned so many things from living through endocarditis but one of the most poignant was this: You never know what someone is going through. How many people do we interact with daily who are doing their best to not fall apart? I am not perfect at it, but I try to be aware of this now when interacting with others.

Today, I am incredibly fortunate to have the infection behind me and to have survived removal of the old technology. My last procedure of this whole ordeal was in January 2020, when my new ICD system implanted. As my body began to heal, the world entered the terrifying era of COVID and like many others, I have since had a lot of time for reflection.

Although I still do not know what caused my endocarditis, I realize my lifestyle before was not helping. I was living as if I were a rubber band with infinite amounts of capacity to stretch even further. I did not have particularly good boundaries in my personal or professional life, saying yes to everything, afraid to let anyone down or let an opportunity pass me by.

Now, I am much more selective and deliberate at how I spend my time. I prioritize a good night sleep; this is something I would have easily sacrificed before. Although I am still driven to accomplish new things, I am much more content with what I already have.

I would not have this state of acceptance if I had not been faced with the possibility of losing everything. I have endocarditis to thank for this new perspective.

Finally, I could not have gotten through this without the incredible support from my family, friends, and the ACHD community. My husband grabbed my hand and walked into the fire with me; he was the support I relied on daily and the reason I continued to push forward. He is my hero. To my family, friends, and the ACHD community: I am blown away by the care and concern you gave (and continue to give) me. Thank you for showing up for me when I needed you most. I am forever grateful. Love, Carrie.