I started my AFib journey on March 16, 2009. With a strong maternal history of heart disease, I have been taking my morning vital signs every day for decades. That morning in March it was WAY off. I thought it must be the remnant of a bad dream and went on with my day. Only the day got harder and harder as I went along. Shortness of breath with any exertion, bounding BP (180/130) and pulse (180+) all day. No, I didn't go to the ER because both of my hospitals were on probation for failing their Joint Commission inspections. It was over the next day, so I went on with my schedule. Then it happened again 10 days later. After 6 weeks and 5 more 'event days', I saw my GP. She suggested the new cardiologist in town. He did the usual testing (ECG, echocardiogram, nuclear treadmill and 24 hour Holter monitor). Of course, my heart was quiet. Despite my spreadsheets and asking for a longer heart monitor, he patted me on the arm and said, 'It is anxiety or menopause. See your GP for meds.' and walked out.Over the next year, the events went from every 10 days to twice a week. Needing a recovery day after each 'event' day meant I was now losing 4 days a week to 'anxiety or menopause.' I changed my diet, exercise, sleep, anything to lessen the serverity and/or frequency of these events. My GP left a standing order for an ECG on request/no appointment and we finally documented it. Her PA who had extensive cardiovascular experience read the ECG and said two words on March 3, 2010 that would change my life , atrial fibrillation. While I waited for a follow-up appointment with the cardiologist I dug into the internet and Google Scholar to research.When I saw the same cardiologist, he said 'oh, yeah, AFib. You won't die.' He ordered repeat tests. And wanted me to take warfarin and digoxin. Having been a family caregiver and now having read up on AFib, I asked about alternative meds as digoxin was considered a third line med for rhythm control. He said, 'I'm the doctor.' And I replied, 'It's my heart.' Luckily, the repeat testing showed no heart changes. With those results in hand, I started to interview EPs (electrophysiologists - cardiologist who has studied an add'l 2-3 yrs to specialize in arrhythmias). Over the next 2 months, I tried and failed (meaning they didn't work or made my AFib worse) several med combinations.
At that point, I was ready for something else. Lifestyle changes didnt' work. Meds didn't work. That left a cardiac ablation. That's procedure where they burn (ablate) the upper chambers of your heart. The scar tissue stops the erratic electrical pulses. The EP gave me a 60% chance of success. I took it. It was my first time *ever* in the hospital as a patient. I wasn't scared. I was annoyed that all my decades of healthy lifestyle to avoid a heart issue had led to a surprise diagnosis of AFib. I practically raced the staff to the EP Lab. It was a rocky recovery due to infections. I came out of it 6 months later with normal rhythm (NSR) and no meds. That ablation lasted 5 years. In 2015, I had a second ablation as AFib returned after a life-threatening experience. This was a quicker recovery and I'm back in NSR with no meds.
Today, I am a patient representative to the FDA for cardiovascular disease; a published co-author in a medical journal; live tweet medical conferences for patients, researchers and clinicians; run an AFib support forum on Facebook; the Patient PI (primary investigator) for multiple research grants; and the Chair of the Health eHeart Alliance where I met Marcia Baker from Mended Hearts.