I’ve been meaning to get this post published since June 16th, the actual date of my 10-year anniversary with atrial fibrillation, but I’ve been busy so I’m a little late. On June 16, 2006 I was officially diagnosed with afib. I was 33 years old.
I remember it like it was yesterday. How could I forget? It was Father’s Day, June 16, 2006, and I was just about to sit down with my wife and our 2 year-old daughter at the time to watch TV when BAM – my heart took off. I thought I was having a heart attack. I told my wife to call 911 and shortly after I was in the back of an ambulance on the way to the ER. Those were fun times – NOT!
Over the years my journey with afib has been mostly benign (thank God). While it hasn’t exactly been “fun” to deal with, it hasn’t completely crippled my life – although it has dramatically changed it. Some changes have been for the better and some for the worse. Either way, being diagnosed with atrial fibrillation is a definite game changer.
A Summary of My 10-Year Journey with Atrial Fibrillation
Here is a summary of my journey with afib as I reflect over the past 10 years:
- I was carted off to the ER in the back of an ambulance on Father’s Day, June 16, 2006, as I thought I was having a heart attack. Within 4 hours of being in the ER I was electrically cardioverted. I was told I had an episode of “atrial fibrillation” and should follow up with a cardiologist. I didn’t know it then but my life would never be the same.
- I have had a total of 16 episodes of afib since that first diagnosis. Twelve episodes were in 2014 alone! I only had 2 episodes in 2015 (both before my ablation in March 2015).
- I have had 4 electrical cardioversions. Fortunately, all 4 were completely painless and not a big deal at all (but very expensive and inconvenient).
- I started the pill-in-the-pocket protocol with Flecainide in June 2014. I took 300mg of Flecainide only when I had an episode. This was a God-send because I no longer had to go to the ER every time I had an episode to get electrically cardioverted!
- Other than Flecainide taken as-needed, I haven’t been on any other drugs other than a very brief stint with Eliquis, a blood thinner (see below).
- I had a catheter ablation on March 5, 2015. I was on Eliquis for about 6 weeks prior to the procedure and 8 weeks after the ablation.
- I was blessed with a flawless blanking period. My recovery went so well that I was able to stop the Eliquis a month earlier than planned!
- I’ve been afib-free since my ablation on March 5, 2015. However, I have been battling nasty PVCs and PACs from time-to-time.
- In an attempt to prevent my periodic battles with PVCs and PACs, I have spent a lot of money taking magnesium EXA tests and RBC blood tests in 2015 and 2016 and taking copious amounts of high quality (i.e. expensive) magnesium supplements to increase my magnesium levels. I learned a lot from these tests and about magnesium but the PVCs and PACs continue to rear the ugly heads from time-to-time.
- To make sure I didn’t have sleep apnea, which can make afib worse, I had a sleep study done to rule it out. Fortunately, I didn’t have sleep apnea.
I’m Afib-Free Now But Do I Still Have Atrial Fibrillation?
Here’s why I ask the question:
If you have atrial fibrillation and then you have a successful ablation and as a result you don’t have any more afib episodes, are you truly free from it or do you still have it but it’s just dormant, or in remission? In other words, is the afib really gone or is it simply being “blocked” or “put in its place” for now (and hopefully for eternity)?
Do I tell people I had afib for 9 years but no longer have it (i.e. I’m afib-free), or do I tell people I’ve had it now for 10 years but haven’t had any episodes since my ablation (because I’m essentially in remission)?
Some of the leaders in the afib space who have had successful ablations or other surgical procedures and who no longer have afib episodes declare themselves “free of afib” and essentially cured. I’m referring to such leaders as Mellanie True Hills of StopAfib.org, Shannon Dickson of Afibbers.org, and Steve Ryan of a-fib.com. All of these people have gone many years (7-15+ years) without afib after their procedures. They say they are “cured” or at least afib-free.
Let’s Get Deep For a Minute
I don’t want to get really deep into this topic but it is one I often think about so bear with me here. I contend that once you experience afib you always have afib. That is to say, you always have that “defect” in your body that can cause episodes of atrial fibrillation.
Remember, atrial fibrillation is simply a description of an arrhythmia. But what CAUSES the arrhythmia in the first place? Well, nobody knows but obviously it’s caused by some kind of “defect” in your body. We don’t know what that defect is but hopefully someday we will.
You may have a successful ablation or some other surgical procedure to stop the arrhythmia from occurring, but upstream from the heart that defect is still there – the defect that causes the heart to go into afib in the first place. At least this is my understanding of how all this works.
If I’m correct, then while we might be afib-free (i.e. we don’t experience atrial fibrillation episodes anymore), we’re never truly cured from it. The defect that causes afib is still there.
As such, this probably is my 10th anniversary of sorts, but not necessarily my 10-year anniversary with afib. After all, if I’m not having any atrial fibrillation episodes how can I say “10 years with afib?”
What I should probably say is that I had afib for 9 years but have been afib-free since 2015. I’m essentially in remission. If there is a 10-year anniversary to reflect on it isn’t with afib, but it’s with the battle of the defect that causes afib. Make sense? Clear as mud, right?
At the end of the day all I care about is that I’m not experiencing afib and I’m not taking any drugs to prevent it either. The defect might be living large in my body but as long as it isn’t allowed to wreak havoc on my heart, I’m perfectly happy. I’ll gladly go to my grave with this defect as long as it isn’t allowed to ruin my heart and my life!
But that is the key, right? – preventing the effects of this defect. For some of us that means drugs and for others like me it means an ablation. And sometimes it’s a combination of the two. Whatever works is all we care about, right?
I hope someday in my lifetime they find what the “defect” is so we can find a way to attack the source and not the symptom (the afib arrhythmia). Until then, we need to be thankful for the treatments that are available that allow us to still live a normal life despite this defect in our body!
Travis, thank you so much for this blog. Jeff, your story was very helpful to me. I had my first a fib episode in early June and spent 5 days in the hospital before my heart rate was somewhat under control. I underwent a cardio version about 3 weeks later and felt tremendous relief.
Over the past 2 months I’ve had only small problems with a-fib episodes. I’m currently on metoprolol, eliquis, and cardizem, all of which keep my heart controlled, my blood thinned, and unfortunately, a little short of breath. I plan to have an ablation and in the process of making a list of hospitals and doctors. Does anyone have recommendations? I live in Southern California.
Kevin:
I’m glad you find the blog helpful! Since you live in California there is only once choice – Dr. Natale! He’s the best in the world and you’re very fortunate that he does ablations right in CA (San Francisco to be exact). You can read about Robert’s experience with Dr. Natale here:
https://www.livingwithatrialfibrillation.com/1922/roberts-catheter-ablation-experience/
Travis
P.S. Dr. Natale did my ablation as well. I flew from Minneapolis to Austin, TX to have mine done. If Dr. Natale was in Australia I would have flown there:)
Jeff:
Thanks for the comments. Until they find the true cause and consequent cure, I just hope they perfect the ablation so we can have a permanent treatment sometime soon!
Travis
What a way to spend the 4th of July weekend. My “episode” happened Saturday while at the gym. I’m about 10 minutes into what was a general warm up on the elliptical. I’m in better than average shape (almost laughable at this point) for a man my age and have a very healthy diet.
While on the elliptical I suddenly feel a tightness in my chest, am instantly out of breath and feeling lightheaded. My pulse goes through the roof (185 bpm). Long story short I end up in the ER and get my diagnosis. Spent the night and my rhythm did come back without any electric stimulus. They did give me a shot of something to slow my heart rate. I’ll be seeing a cardiologist this week and we’ll see where it goes. Right now I’m trying to deal with the anxiety of “what if this happens again?” I guess it’s something I’m going to have to learn to live with.
George:
Sorry to hear about your recent diagnosis of atrial fibrillation. I’m not going to sugar coat it for you. It sucks! But the good news is if you are proactive and battle the beast head on, you can live a fairly normal life!
After you’ve had a chance to talk to your cardiologist, it would be great if you could come back here with an update on where things are at or contact me directly with an update via my contact page.
Ideally, your cardiologist will put you on a heart rate monitor for a while – say 15 – 30 days – to see how frequent you have these episodes (if you have them at all). It sounds like you are symptomatic when you are in afib so a monitor may not even be necessary but it’s still a good idea to do to rule out silent afib (having afib episodes and not even knowing about it).
Once you know the frequency of your afib, then an appropriate treatment plan can be put into place.
I wish you well!
Travis
Well put. The ablation is best described, in my opinion, as an “effective treatment for AF”. That efficacy may be as high as 100% in some cases. But it is a treatment, not a cure of whatever electrical substrate exists in our left atria that causes them to conduct chaotically. I don’t think medical science is going to learn how to “ungrow” nerve ganglia in our hearts anytime soon, so ablation remains the best non-pharmaceutical intervention we have.
Jeff:
Thanks for the comments. Until they find the true cause and consequent cure, I just hope they perfect the ablation so we can have a permanent treatment sometime soon!
Travis
Copyright 2023 – Living with Atrial Fibrillation