1979: I was 24 years old, physically active, and just getting started in my career. I was in the hospital to determine why I had bloody pee when the doctors asked me if I ever got dizzy. Yes, all the time; did they want to see me faint? They did, so I fainted on command. After I came to, they told me I had something called atrial fibrillation (AFib), or an irregular, often rapid heartbeat. Oh, and not to eat beets with the skins on; it can mimic bloody pee.
The doctors told me they’d never seen anyone so young with AFib, and they didn’t really know what to do with me. They gave me a heart rate control medication usually given to over 70-year-old AFib sufferers to help them move from the bed to the window. I took the meds, and continued to live my life. I didn’t learn much about AFib (this was pre-Google, after all), but the diagnosis did seem to explain why my heart rate in aerobics class was double everyone else’s, and why I was always at the back of any hiking group. And why I got dizzy so often.
1994: I moved to another state and was meeting with a new cardiologist. By contrast to all the previous heart doctors, this one actually specialized in AFib. He asked me what my goals were for my AFib, as I’d be living with it for the rest of my life. I learned then that I had “permanent AFib,” where your heart is out of rhythm 24/7, 365 days a year. There was some kind of surgery that could correct it (an ablation, where the doctor uses hot or cold energy to create scars that stop the irregular heartbeat), but I apparently was not a suitable candidate because I’d been in AFib for so long.
I told the doc about my love of hiking, and that I wanted to be able to do some running too. He prescribed different rate control meds (calcium channel blockers) to help me achieve the highest level of activity possible in my condition. Hallelujah!
2009: My family spent several weeks at high elevation in Peru, trekking on the Salkantay Trail to reach Macchu Picchu. I was dizzy the entire time, but go****it, I was not going to let AFib take this achievement away from me. At the highest point in our trek (15,000 feet), I realized that unless I found a miracle cure, this was probably the end of most of my uphill hiking.
Getting back home, I did a little research into then-current AFib treatments and found a specialist with a different approach who had an office less than 10 miles from my home. This doctor did a cardiac MRI to see how much scarring was in my heart from the 30-something years of continual AFib, and gave me a 70+% chance of success with an ablation. (His thesis: less scarring = greater ablation success.)
I had the ablation, and was back in normal sinus rhythm for the first time in 30 years. More Hallelujah!
2019: Over the previous year, I had started to have episodes of AFib again, increasing in frequency and duration as time went on. The doctor advised a second ablation, which returned me to normal rhythm.
2021: I am almost 67 years old. I am now diagnosed with “paroxysmal AFib,” where I am mostly in normal rhythm, but have a breakthrough AFib episode every month or two. Rhythm control meds, taken as needed, are effective in converting me back to normal rhythm from these episodes. I’m trying to remain active and stay positive.
So, what have I learned about “diagnosis” from this long history? A diagnosis of AFib is the first step in possibly a long journey. My experience of AFib has changed over time, as has the medical knowledge about the condition, along with the available treatments. Which means that the doctor’s perception of my AFib -- their “diagnosis” -- changes as my condition changes and as time goes on.
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