It sneaks up on us a little more stealthily each year. Days and months pass and the fact of heart warfare lies beneath the surface of our lives, dormant, docile, and unthreatening. Ever since Charlotte’s third surgery, we’ve lived with Dr. Backer’s words, “You’ll likely never need another open-heart surgery,” as though they were a magically already fulfilled prophecy and a protective shield rolled into one.
Basically, every 365 days or so, we schedule Charlotte’s cardiology check up, Charlotte has an echocardiogram and an ECG, Dr. Hauck gives us a thumbs up, we get lentil soup at Sultan’s Market or cookies and tea at Colectivo, and we go home.
Covid-19 delayed our annual outing this year and there were no treats afterwords. 365 days stretched toward 500 days. It wasn’t until Charlotte had a minor abnormal fluttery feeling in her heart that either of us remembered to schedule her check up.
Aside from the date, November 3, it started as a normal appointment. Tensions were a bit high because of election uncertainty, but not because of the doctor. The echocardiogram took longer than we remembered it taking, but sometimes it has been hard to capture certain views of Charlotte’s right pulmonary artery. When the technician left the room to get the cardiologist who specializes in echo reading, I began to worry.
Charlotte nearly panicked. This was not our routine and didn’t fit the plan. I tried to play it down, “She just needs help to get a better view. She just wants to make sure she has everything Dr. Hauck needs.” All the while, I was gagging on the memories of that day in January 2005 when a sonographer left the room to get a colleague,”Just to help me get a better view.” We knew in that moment that something was terribly wrong.The blank space between her departure and the doctor’s explanation were an excruciating eternity of imagining the worst without coming close to what he might say.
Sitting across the room from my daughter, who was already stressed out because it was Election Day, I concentrated on my game of Threes to distract myself. She wasn’t having any of my comfort, so I stopped trying The bass drum of my heart beat in my ears. My brain started its internal doom scrolling. I’ve gotten pretty good at choking back my tears to focus on her welfare, so I thought I had it covered.
Spoiler alert: Charlotte is fine. Sort of. She’s as fine as a young adult living with Truncus Arteriousus Type 1 can be. But the blinders have been ripped off, the protective shield is punctured, and we won’t skip blithely through the next 365 days.
The velocity in Charlotte’s right pulmonary artery is trending ever-so-slightly in the wrong direction, indicating that the blood flow is blocked somehow. The echocardiogram was, not surprisingly, inconclusive. Charlotte’s heart, it seems, is too close to her chest cavity for the wand to pick up the sound and draw its magic picture. This proximity also gives me one of my favorite gifts–her loud, strong heartbeat that I can often hear in a very quiet room if we are sitting close enough. But it can make diagnoses difficult.
In a perfect world, we’d go next for an MRI with contrast so the doctors can get a better look. I’m sure you know by now that life with a CHD is not and never will be a perfect world. Among other things it has created sever medical anxiety so anything with needles is off the table right now.
We’ll be heading back in June for another echocardiogram and hopefully a better picture. If the numbers stay flat, we stay the course and go back every six months. If they continue to creep downhill, we’ll look towards more diagnostic imaging.
In case you’re not adept at reading between the lines, this is the beginning of Charlotte’s next journey toward an intervention of some kind. If Dr. Backer’s magic force field is intact, we’ll be talking about some kind of catheter procedure. That is the only possibility we can manage or think about right now.
Truncus arteriosus is docile and dormant no more. Welcome to #CHDAware week, or just another day in our lives.
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