I think of my relationship with my AFib doctor and his staff as a collaboration. Yes, I’m the patient and the doctor is the professional, but our status is more equal than might be imagined. AFib can be life-threatening, and to prevent that, I truly value the doctor’s knowledge. But AFib is also a quality-of-life condition, and for that, I’m as much an expert as my doctor and his team.
I’ve lived with AFib for over 40 years. I’ve done a lot of research about it, and I have a lot of lived experience with its many manifestations in my body. My interactions with medical professionals related to my AFib fall generally into two categories: regular checkups and AFib episodes.
Regular checkups are an opportunity for the doctor to learn how my AFib has been acting over the past year, to ask how I’m feeling about it, and for us to review whether any changes in AFib management are called for. The doctor expects me to be honest about what’s happening and how it’s affecting my quality of life, and I expect the doctor to be open-minded in finding a treatment approach that gets me close to the quality of life I’m hoping for.
After so many years of random AFib episodes, my doctor and I have agreed on an approach that works for both of us. As soon as I suspect that I’m in AFib, I monitor my heart rate and rhythm on my Apple Watch. If I am in AFib, I take a heart rhythm medication every 12 hours until I’m back in normal rhythm (referred to as “pill in the pocket”). If my AFib episode lasts less than 24 hours, I don’t have to get in touch with the doctor’s office (although I do keep the data to show him during the next checkup). If the episode lasts longer, I email the Apple Watch data to his physician assistant (PA), who calls me, and we figure out next steps. If I have more than one episode every couple of months, I let the PA and doctor know, and they usually schedule a visit.
So, how does this play out in real life? At my last checkup, the doctor was concerned about how frequently I was having AFib episodes. He recommended that I take the heart rhythm medication every day as a precaution. I didn’t want to, because I don’t like how it makes me feel when I’m in normal rhythm (dizzy). We chatted, and he agreed that I could continue using the pill-in-a-pocket method unless the episodes became more frequent. (Thankfully, they haven’t.)
Several years ago, I had a similar difference of opinion with my doctor about taking blood thinners. I didn’t want to take them because I hike a lot and didn’t want the bleeding risks. I also hated the one blood thinner I’d been on. (I needed to take blood tests and adjust dosage on a weekly basis.) The doctor was a little more insistent over this issue. He showed me data about my increased risk of stroke simply due to age (over 65) and because of the more frequent AFib episodes. He told me about newer types of blood thinners that are easier to manage. He was persuasive enough that I have been on daily blood thinners ever since.
AFib is different for each individual, meaning there is no one-size-fits-all way of treating it. The AFib patient’s relationship with their doctor should be a conversation, with the doctor educating the patient about real risks and the patient educating the doctor about their quality-of-life preferences. Together, they make a good decision-making team.
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