WHAT THIS POST IS ABOUT: Living with atrial fibrillation is not easy. This post highlights how I’ve used consumer technology like the Apple Watch to manage Afib and, ultimately, influence my healthcare.
My heart “numbers” were getting worse, I felt like shit most of the time, and I had to do something about it.
It was time to put into action what I had been doing with consumer healthcare technology and see where it could take me.
Here is what happened.
End of January 2019: A New Drug Introduced
Visiting my cardiologist for a follow-up appointment, we talked (yet again) about treatment strategies for recent bouts of atrial fibrillation, an irregular heart rhythm I’ve successfully managed for 20-plus years but still have to live with on a daily basis.
The cardiologist suggested I take Multaq, a drug I had never heard of, but it’s supposed to better target atrial fibrillation — where the upper chambers of the heart (the atria) beat out of rhythm. Digoxin, which I’ve been taking for years, is a different kind of heart medication that deals with congestive heart failure and can be used for irregular heart rhythms.
Most people, and the tech media who report on folks who discover they have atrial fibrillation after wearing an Apple Watch, have little understanding of what Afib is and how frustrating and challenging it can be for patients and doctors. We are always (or should be) looking for ways to improve care, especially when it involves medication and side effects.
So when the cardiologist suggested Multaq I figured “why not.” If it works and I feel better, great. If not, I can return to what I’ve been doing or try something else.
Within the first week on the new drug, I felt like shit and turned to “my numbers” to see what, if anything, was happening. Since the first Apple Watch in 2015, I’ve collected heart rate data and looked in on it periodically to see if “all is OK.”
(I’m going to post next on this process because, in many ways, I am using the Apple Watch not as intended, yet it has led me to discoveries of atrial fibrillation and arteriosclerosis, resulting in two ablations and a stent.)
Since my lovely wife upgraded my Apple Watch to Series 4 in November 2018 I’ve taken my monitoring practice and learning to the next level because the technology is more mature, ECG functionality is now available, and somehow it all seems to work better in detecting atrial fibrillation or irregular heart rhythms.
I don’t immediately react to Afib notifications because I see these multiple times a day. I’d be Henny Penny proclaiming the “sky is falling!” I watch the “numbers” for at least two weeks for trends and, if something worsens, I call the doctor or head to the ER.
Because I was feeling like crap, I called the cardiologist, explained the situation, and relayed that “my numbers” were “up” for informational purposes. (I wrote about this in the post I (Heart) Notion.)
The doctor wanted to see me, and two things happened.
One: I was able to check on the Apple Watch by comparing it to professional monitoring equipment in the hospital. This is important for accuracy, of course, but also for trust. (I chronicled this in Your (Apple) Watch is Correct).
Two: I was given a heart monitor to wear for 24 hours, important because doctors could see my heart performance over an extended period of time with much more sensitive equipment. It also allowed me, again, to compare data I was collecting and interpreting with the “professionals.”
I figured atrial fibrillation. Surprisingly, the heart monitor revealed atrial flutter, when the atria beats in rhythm (unlike Afib) but super fast like a hummingbird’s wings. (I chronicled this in the post Apple Watch “Diagnoses” AFlutter).
The Apple Watch wasn’t wrong, per se. Something was amiss. I just didn’t interpret it correctly.
So . . . what to do?
Mid-March 2019: Loaded with Data
I went to see the electrophysiologist loaded with data from the Apple Watch, HeartWatch, and Notion and brainstormed in NoteShelf2, where I color coded data points, connected dots, sketched ideas, and summarized for myself and the doctor.
My goal wasn’t to tell the doctor what to do. He’s the expert. I wasn’t even sure what the information meant, truthfully. I just wanted to present “evidence-based” observations for discussion. These included:
- My heart rate averaged more than 100 beats daily for 23 of 28 days, including 18 consecutive at the time of the appointment. This is considered “elevated” and far from normal (or “resting”) heart rates.
- The eight days prior to the appointment, the daily average rose between 112 and 118 — clearly more than the 110 daily average threshold between “safe” and “problematic.”
- My overall average for the month had risen to 105.
- For context, my heart rate was more than 100 bpm for 24 hours, 18 consecutive days. With Afib, that means it could dip into the 70s, then make up for the difference by hitting 130 or 160 at any time during the day — in the middle of the night while asleep or sitting calmly on the sofa watching TV with the family.
- For even more perspective, before the drug change, my daily average was 89 bpm — not great but bearable with room for improvement. A healthy, resting heart rate depends, obviously, on the overall health of an individual but are usually in the 50s or 60s (or 70s for some).
This is where it gets tricky.
Because of past ablations and cardioversions, the doctor was ruling out more procedures — unless I wanted them. His reasoning: If they haven’t “taken” by now there’s a good chance that they will offer only temporary relief before the Afib and Aflutter return.
“My question for you is what do you want to do because you’ve been dealing with this Afib for a very long time,” he said. “My impression is you will have good and bad days. That is the nature of Afib.
“The things we have to offer are more of the medicine you are already taking, another ablation procedure, but you’ve already gone through so many you probably don’t want to do that. I am willing to do it. It’s really your decision.”
At this point the doctor and I are at a standoff.
Having chronic Afib and Aflutter is more than “good and bad days.” It’s a quality of life issue that, to be frank, doctors mostly don’t care about and those new to irregular heart rhythms don’t understand yet.— Me
Having chronic Afib and Aflutter is more than “good and bad days.” It’s a quality of life issue that, to be frank, doctors mostly don’t care about and those new to irregular heart rhythms don’t understand yet.
Cardiologists and electrophysiologists are all about symptoms and treating the underlying cause through surgeries, less-invasive procedures, and drug treatments. Beyond that, they’re out — like now. I’ve clearly frustrated the doctor.(Looking at heart care from another perspective is the subject of a future post based on Dr. Sandeep Jauhar’s excellent book Heart: A History.)
The doctor was ready to wrap it up. But we still hadn’t addressed an actual solution or treatment strategy other than “live with it” and “good days and bad days.”
“From what I can tell, my numbers are trending up and I am getting closer to that danger zone of 110 you talk about,” I said.
Being careful — I didn’t want to insult him — I pressed ahead: “I am not a professional like you. I have no idea if these numbers are correct, although I have tested them twice against your professional equipment and I feel confident they are close.”
“I don’t want to leave here without doing anything.”
Epilogue: Why Paying Attention is So Important
Figuring what the hell, I said, “I want to come off the Multaq because that clearly is impacting my heart rate and how I feel. The number of episodes of Afib seem to be coming down, but at what cost?
“At some point this becomes a quality of life issue.”
The doctor agreed and left the room, politely, but clearly perturbed.
P.S. No Time for Gloating: There’s More Work Ahead
Over the following week I noticed my daily average heart rate, which was encouraging. Over the month I had had only one day in the 100s, 13 in the 90s, six in the 80s, and even four in the 70s, while the percentage of time “elevated” during the day dropped from 90 percent to less than 20.
I’m glad I took my “numbers” and willingness to use consumer technologies to the doctors. It’s not that they were wrong and I was right. It’s that I, as a responsible patient, can (and should) use whatever is available to me to assist and (maybe) improve my healthcare.
I’ll never be “cured” of atrial fibrillation because there is no actual cure, unless I want a pacemaker and I’m far too young for that radical step.
For now I’ll keep collecting heart data, monitoring my “numbers,” looking for trends and, when I need to, contact the doctors.
This experience (and what I’ve been learning since 2015) has encouraged me to up my efforts to the next next level, whatever that means. I’ve been loosely monitoring sleep, nutrition (using My Net Diary), weight (using a Withings digital scale), and fitness (using the Apple Watch and Glo, an online yoga service connected to the watch).
What more can I learn about myself and atrial fibrillation? No idea.
But the effort is worth it because, as the doctor so bluntly put it, “Living with Afib is not easy.”
If you’ve made it this far, thanks so much. I know it’s a long narrative, but I feel like I need to provide context. The shorter, less-meaty “listacles” come later. Peace.
Oh, one more post that’s in this evolving “series” is my take on the Stanford Apple Heart Study.)