This year has been a bit rocky and I wanted to share the latest part of my story – now that I appear to have an end (to this chapter):
For 6 years, I had been telling the story of my “episode”. I regularly downloaded data and, once the team got used to my “regular weirdness”, only checked in for a quick “all is well” with my doctor once a year.
This past November, I was brushing my teeth before an afternoon-close shift at the bookstore. I leaned forward, using my spare hand to hold back my hair.
The chips in the porcelain at the bottom of the sink started to duplicate and float apart. “This is odd, ” I thought. “I must have hit some nerve while getting those back teeth.”
Time stretched. This all happened in seconds or parts of seconds, even. But I had an entire dialogue with myself.
I felt myself moving forward and gripped the edge of the sink with my left hand. “Is this a ghost? Is some evil spirit trying to smash my head into the sink?” I tried to brace.
There was impact in my chest. At first, I thought the ghost had managed to hit my chest on the sink edge. I screamed.
As I sank to the floor, I realized that my defibrillator had gone off. Someone had once told me it felt like getting kicked by a horse when they went off. Instead, I felt a rather gentle jab. No pain remained afterwards, no soreness. Just jitters. Adrenaline raced through my system after the burst of electricity corrected my heart.
I went to work an hour late. I probably shouldn’t have gone at all. Most unsettling was the thought of what would have happened if I didn’t have my bionic parts. I’d have been on the floor for hours before my husband got home. There was one moment that night at work when the world tilted and I sat down fast on the floor I was crossing. But no more almost passing out and no more shocks.
They downloaded my data – it was a legitimate episode – the defibrillator was doing its work properly. I went through a battery of tests in the next few weeks to try to figure out why it had happened. In late December, we had to settle that we could not figure it out. That things went awry as they are wont occasionally when you have Long QT and our safeguards worked as planned.
It didn’t end there, though. I could tell that something was still not quite right. I had two good weeks in January, where I felt relatively normal. Then there was an odd moment where I started feeling dizzy in the grocery store. I hurried to buy some cold water and, as I caught up with Joel, suddenly felt like I had no legs. Moments of dizziness, exhaustion, and shortness of breath on exertion followed.
Finally, one Friday in late February, I got so out of breath running a few brief errands after work that I went to the emergency room. My heart rate was so low, they thought I was in heart failure and rushed me to the trauma bay. A flurry of hands took off my clothes, put in an IV, stuck on leads and tried to figure out my story. More tests, more reviewing doctors. I had premature beats, or PVCs, but no other issue could be seen. I seemed fine and went home the next day.
But the exhaustion, chest pain, and shortness of breath continued. I frequently came home from work and got into bed. Sleep was the only source of any relief. I drank over a gallon of water a day. I went through a bunch of tests. Still nothing.
Those PVCs, though. In November, they had measured PVCs 5% of the time. In March, they checked again. I was at 24%. One-quarter of the time I had early, ineffective beats. There was a procedure to stop the source of the bad beats, but it involved sedation and my doctors weren’t sure this was my only problem. Tests continued to see if anything else might be causing my symptoms. For months.
Finally, in June, we decided we weren’t going to find anything else and that we should go ahead with the procedure – an ablation. Over 4.5 hours, they used a catheter to map the electrical activity in my heart and then started zapping the spot where the largest number of premature beats originated. In the photo below, the red is the “culprit” location.
My PVC rate is now 16%.
I feel better that I have since that fateful ghost battle while brushing my teeth. Joel said he could hear it in my voice as soon as I came home.
And I really appreciate the struggle, frustration, and emotional roller coaster of people who suffer undiagnosed issues. I’ve heard stories of people going years before answers are found. I cannot imagine it. A few months was torture for me. With each new test I hoped for something. With each “normal” result, I sank deeper into despair.
I am oh, so grateful for the device that saved me. I also have a new appreciation for the delicate balance of the systems in our body. That I could walk a few blocks to a park last night to see my brother’s band play – and get up and dance for at least the final song – the joy and wonder explodes around me. It rocks to feel free again.