Editor’s Note: Paul is a regular reader of my blog and recently reached out to me. He wanted to share his afib story with my readers. This is his story written in his own words. I thank him for sharing his experience with us and I congratulate him on having the courage to have an ablation to end his afib. I wish him many years of NSR!
Jump Ahead To:
My Life Before Afib
My name is Paul and I have a family history of heart disease. My father died of his second heart attack at the age of 43 when I was 17. Because of this I took up running at the age of 40. In addition to my work as an IT Project Manager and Software Architect, I’ve been a professional musician since I was 19.
I’ve never been athletic, but I lived a relatively healthy lifestyle and was in decent shape. Running was a real blessing and I had never felt better in my life. I averaged 12-15 miles a week, many more on vacation, and ran a half-marathon.
The Beginning of My Afib Journey
Around November of 2017 at the age of 50 I started feeling strangely after runs. I thought maybe I was just getting older and trying too hard to keep up with younger runners. My symptoms were a very fast and erratic heartbeat especially triggered by running. When it started I dialed my effort back a little but that didn’t work.
It became progressively easier to trigger the attacks. The attacks would last anywhere from a few hours to as many as 24 hours on a few occasions. I went to my local doctor and cardiologist who ordered a monitoring vest.
The vest showed that most of the time I had a perfect heart rhythm of 51 beats per minute at rest. However, when I went out running the attack would happen. My heart-rate would jump to over 200 and be very erratic. I was diagnosed with Afib.
At my follow-up visit to the cardiologist we discussed the results. He scratched his head as to what course of action to try. He suggested metoprolol during my attacks to ease the symptoms. He also suggested that I stop running until we figured out the next move.
The metoprolol was a disaster. Because I’m a runner, my blood pressure is good and low. The metoprolol dropped it through the floor. I came very close to passing out a few times.
I found ways to pray, meditate, and relax to try to prevent the Afib thinking that I could learn to live with it, but it kept coming back. I would have an attack about once per week. Sometimes they would be triggered by nothing at all, just sitting and watching TV with my family.
At my next visit with the cardiologist we discussed other possible drug options. They were not really options in my case. My Afib was paroxysmal meaning it happened occasionally, not constantly. Most of the drug treatments are geared to persistent Afib. Regardless, most drug treatments are proven to be less effective as your body gets used to the drug causing you to need more and more over time until they simply no longer work.
For me, a major downfall of drugs was how they affected me. I nearly passed out taking metoprolol. Drugs simply wouldn’t allow me to return to running which had become a big part of my life.
The other drawback even if I took drugs was that the longer you have Afib, the more deeply the problematic pathways in your heart can become which can make treatment more difficult.
The Decision to Have an Ablation
Based on all this information we decided that an ablation was the best course of action. Ablations are not without risk, however. In fact, the risks can be extreme although the occurrence of complications is historically very low. Still, they were scary sounding.
Risks aside, I was told that with the ablation I would be able to return to running and all my usual tasks. It’s a quality of life decision. The success rate is high. It was explained to me that it is not a cure for Afib. Afib is a condition that can return after an ablation. I was very glad that my EP was very straight with me about the procedure, the risks, and rewards.
The date of my ablation was set for three months later. I was actually comforted by the wait. I figured if the doctors were that busy then they must be getting lots of experience.
The next three months were hard on my family. I kept a game face on, but they knew that I was worried. It’s a terrible feeling knowing that something as critically important as your heart is malfunctioning. I could remind myself of all the things that my doctors told me: not to worry because I have a strong heart because of my running, most people don’t die from Afib, and my attacks only lasted around 12 hours.
It was rough during the attacks wondering if THIS time I should go to the hospital. I was consumed with the thought of it and all the what-ifs.
I think it was hardest on my wife. I knew how I felt inside but she had to take my word for it that I was feeling fine. During this time, I also took a small hiatus from playing music professionally. This is something that always brought me much joy and peace and taking a break from it was very hard to do.
An interesting thing happened during the three-month wait. My Afib events seemed to lessen in frequency and severity. I was being very careful with exertion which I knew would bring on events so this may have helped. Also, the fact that I was committed to a course of action may have reduced stress.
I still had the occasional event, but they stopped lasting 12 hours. Maybe I just got used to them. I started wondering if I was being selfish putting myself and my family through such a potentially extreme procedure so that I could continue running. Maybe I was supposed to stop running and lead a quieter life. Maybe the Afib would quiet down and I would get used to it with much less risk and cost than having the ablation.
The Afib Episode that Validated My Decision to Have an Ablation
My decision to have an ablation was validated the weekend before the ablation date. The family went on a camping trip to a familiar spot. No exertion, just a relaxing weekend. The second night of the trip I had an event starting in the middle of the night. I barely slept and didn’t tell anyone what was happening in the morning. We went on a light hike. There were a few times during the hike where I almost passed out.
I had never had an event this strong before and frankly I was a little scared. Along with the Afib came the worry. What if I was still in Afib tomorrow, who would drive the trailer home? Should I call an ambulance out in the middle of the woods? It was terrible.
All of the sudden in the afternoon an overwhelming feeling of normalcy overcame me. The episode had finally ended. I experienced the dividing line between a normal heartbeat and one that was out of control. I was very thankful for that event. I knew at that moment that if there was a possibility of stopping these events without taking drugs I wanted to try it regardless of the risks. I felt good about moving forward with the ablation.
My Ablation Experience
The morning of October 25, 2018 we drove the hour and a half to University of Maryland Baltimore. The team there was excellent through the entire process. I was on the table for over 5 hours. I had a radio-frequency ablation. During the procedure they found a few “hot spots” that they treated with cryo-ablation.
I spent a total of 24+ hours in the hospital including recovery and went home to recuperate over the weekend. I spent the weekend watching Netflix and felt generally well. I even went for a couple of short walks. I wouldn’t call the process painless or easy, but it wasn’t terrible. I had no issues with bleeding at the incision sites. I was pretty wiped out from the whole experience mostly due to the anesthesia. During the recovery period I was instructed to take Nexium and Eliquis.
I went back to work the following Monday and took it easy. I gradually got back to feeling like myself again. During the three-month period while the heart was healing there were a few episodes of odd beats. I have to admit they were alarming, but I was warned of them.
Life After My Ablation
I think in hindsight the hardest part of Afib is the mental aspect. I miss the days when a slightly racing heart or a flutter feeling simply meant that I was excited. Now I have to convince myself that it’s not something serious. The anxiety can sometimes be tremendous (and I’m not an anxious person at all).
I promised myself that I would give myself a full month without any exercise at all. That moratorium ended on Thanksgiving Day of 2018. I woke up and went for a 2-mile jog. Very, very lightly. It felt good, but my legs were so tired after having not run for so long. I gradually added miles over the months and then tried adding a little more effort and speed. I also promised myself to not push until after the full three months.
I’m now four months post-ablation. I ran my first 2 miles at a 10-minute pace which is close to where I was pre-ablation. Every run feels better and I’m feeling stronger and stronger. Overall, I feel like myself again and am so very thankful for it! I’m also back to playing music regularly and even went hunting a few times.
Through this experience I’ve read so many stories online and know that each case is different. I’m very thankful that I was running before the Afib happened. As a result, I started my afib journey in a very healthy state. In the lead-up to the procedure I had all sorts of heart testing done and was able to clinically confirm my heart was healthy and strong. This was a true comfort because of my family history of heart disease.
I pray that I can continue to heal and improve and live a long life being healthy and running. I want to be the best that I can be so that I can do the work that God put me here to do. I can do all things through Him who strengthens me!
Definitely appreciated this personal story and readers comments. While I’m still in the beginning of my paroxysmal AFib journey, trying to understand it and seek options that are best for me, I think I was undiagnosed for at least a year.
It seems if ablation is an option it should be done sooner rather than later as AFib episodes can continue to do heart damage. Lots to consider. Overwhelming to try to understand.
Finding this site very informative.
Thank you.
CM:
You are correct that it is best to have an ablation sooner than later as it is harder to treat the longer you allow afib to continue. It is definitely overwhelming so if you have any questions feel free to ask them here or you can contact me directly via my contact page. I wish you the best!
Travis
How often do you run? How long each time and your pace? I dare fast walk (1 mile 14.5 – 15 mins) only.
Hi Richard. I’m almost back to my pre-afib mileage and pace of 10-15 miles per week and an average pace of 10:30 in 3 miles. I started to run again very slowly and have built up since around December. I feel like it’s harder than before but that’s mostly due to nervousness on my part. I was running for ten years prior to the afib. I’m so thankful to be able to run again and I’m feeling great!
I am nearly three weeks post op. I do a really steep walk up a hill every day and have done for years. I have noticed it has been substantially harder since my op. Getting out of breath and really sweaty. I sometimes felt I need to stop whereas I never did before.
Unfortunately I also got a nasty virus and got a really bad cough so I am not sure if this is because of the op or the virus.
I keep doing the walk and I hope it will get easier.
Stuart, I was on Eliquis for three months after the ablation. I also felt like all tasks were harder than they should have been while on the meds. I’ve read that the various anticoagulants can have similar side effects. I have no idea if it was meds or just still healing but after stopping the meds I started feeling like myself again.
Hi Paul
I am supposed to take them for one month. I am just about three weeks in. Hopefully, it will stop being an issue soon then.
I’m only 50 days post ablation and I dare quick walk 35 mins every day only, will bump 1 mile to 12 mins/mile after the 3 month blanket time.
BTW, do you have any afib/flutter episode after your ablation and how long did it take for them to go away? I still have several short afib/flutter (10 secs long) everyday, I am praying they will all go away as time goes on.
Hi Richard
No I haven’t had any episodes that I have noticed but they did say I might. Mine had calmed down quite a bit before the op compared to what it had been though and I am still taking the tablets for one month. I was told you won’t know if it has worked for up to three months as the scar tissue has to form properly.
Also I am taking dabigitran blood thinner and I have read that common side effects are shortness of breath, dizziness and stomach ache. As I have dizziness and quite unpleasant stomach aches since the op I am assuming the shortness of breath is also coming from these tablets. Strangely reading that made me feel a bit better.
Hi Richard, great question. After the ablation I did have the occasional flutter. Mine actually felt like missed beats, like every 5th or 6th beat dropped. They were concerning only in that I was hyper-focused on my heart. They never lasted more than a minute and have since stopped. I’m still not over everything mentally. It’s almost a mild form of PTSD. I’m very focused on my heart and every little oddity gives me pause where I wouldn’t have given it a second thought before the afib. This is decreasing as I get more days of normal rhythm and normal activity under my belt.
Paul
That’s a great description. PTSD. I found me testing myself with my Kardia EKG device many times after the op to see if I had a normal heartbeat and I did each time but I still can’t help feeling very conscious of it.
Hopefully if the results are still good then that will fade. My friend who had it done said it took 3 months for his to properly settle down.
what heart rates are you at when you are running? BPM and % of max rate?
Hi Richard. Pre afib my resting HR was 51. I’m hoping it returns to that after some more running. It’s about 60 now. When running hard I can get into the 150s and during a normal workout I tend to stay around 140-145. I’m not sure of my % of max. I’m still not ready to push myself to the max. I’m just happy to be able to get out and do a few miles again without afib.
do you know what caused your afib? athletes have higher chance of developing afib than normal people. I am struggling my exercise frequency and level, I had been running 3.5 years before my ablation, I do fast walking 15 min/mile for 2 miles a day, 6 days a week (BPM 100-110, my rest HR 55-60), even that I am worried I might be over-burdening my heart, I might be too paranoid….
“I do fast walking 15 min/mile for 2 miles a day, 6 days a week (BPM 100-110, my rest HR 55-60),”
I mean now after ablation, I used to run 50-60 miles per month 10-12 min/mile pace
Richard, here’s how it was explained to me by the EP and director of electrophysiology. Doctors aren’t sure what causes afib. It seems to occur naturally in older people but does happen in younger. It hasn’t been linked to lifestyle but may be linked to genetics. Once corrected it can happen again but there hasn’t been enough study to understand the causes. Ablation is a treatment not a cure. If it comes back it can be treated with ablation again. The doctors decide at what point there are diminishing returns on repeated treatments.
He also gave me the advice to listen to my body when returning to exercise. He said that after the healing period of 3 months I could feel free to try whatever I am comfortable with. I too was concerned that I may overdo it. So I just run comfortably and try to add a little something every week. I’m pretty happy with where I am now and will try to improve. However, if the tradeoff for not having afib is that I can only do what I can do today, I would take it. I’m healthy and have my life back.
Listen to your body, fear nothing, pray for everything. I’m glad you’re out there trying, that’s the main thing to do.
God Bless
Hi
I can’t believe how similar your story is to mine. Paroxysmal and not been so bad during the wait for my operation even though it drove me mad before. I too had an episode last week and my operation is in the morning. Your story has convinced me I am doing the right thing although I was mostly convinced anyway.
Thanks for writing. It helps others.
Thanks for the comment. Best of luck with your procedure! God Bless.
Very informative article. The only part I think should of been left out, was the following paragraph:
“Regardless, most drug treatments are proven to be less effective as your body gets used to the drug causing you to need more and more over time until they simply no longer work.”
I think this paragraph will cause unnecessary anxiety to people who use drugs for A-fib. Thinking one day the drugs won’t work on them. And then what?
Also, Paul, never mentioned what the Ablation cost him money wise. Did his medical insurance cover most of it? How much did he pay out of his own pocket? I think if people know how much an Ablation costs, they can start preparing themselves and their budgets, if they decide to go this way in the future.
Thanks for the response, Evelyn. The paragraph you mention was told to me by the EP and my cardiologist. It’s definitely something that should be discussed with your doctor to determine the best approach for you.
The procedure was covered by my insurance. However because of my age there was an arbitration process where my doctor needed to convince the insurance company that this was the best course of action. It’s imperative that you work with your insurance and doctors. I was in daily contact with both.
Thanks again and God Bless.
Thank you for your reply, Paul. Here’s wishing you continued health and happiness.
Can you tell me if the 5 hours on the table for the procedure were you asleep the whole time? Did you feel any pain after?
I am thinking of having it done but I am overweight. My heart is strong from what they tell me. I am nervous about the ablation.
Thank you.
Hi. Mine took a shade under two hours on Friday. I was awake all the time but i know a friend that had it done asleep, I would have preferred that as there was some discomfort as they freeze bits inside your heart.
I was answering email around 1 hour after. I did feel very sore until about lunchtime the next day. My op was at 3pm. I got out of hospital in less than 24 hours. I can’t see any reason not to get it done if you need it. Of course in the UK we have the NHS that pays for all medical care so that’s one less big consideration I guess.
Hi Antoinette. I was asleep for the entire procedure. I felt no pain in my heart after the procedure. The incision sites were tender and showed expected bruising for a few days. I was tired for a week after the procedure, likely from the anesthesia. I feel great now. This was the best decision for me.
Good luck in your choice. God Bless.
Very interesting, informative and encouraging story.
I have had, actually am having a very similar experience, from regular heartbeat all my life until age 50-ish when I experienced my first episode of arrhythmia, which sent me into a panic with ambulance and emergency dept at hospital and tests and all that stuff, after which they sent me home saying that there was nothing wrong with me – obviously the heart had settled down by then.
This happened at least six times over the next thirty years (I am 78 now) but after the second hospital visit I did not bother anymore. However, at various times over the years I went through the Holter experience and had stress tests end ECG’s and more, none of which were conclusive and invariably showed that I had a good strong heart.
Then I went to a specialist who charged me a lot of money, did not tell me anything new, but insisted that I take Xarelto and Sotalol. That is when my trouble really started because my arrhythmia was intermittent before but now became permanent and quite savage. Plus I started to bleed from various orifices.
My heart felt like it was jumping out of my chest. After a few weeks of this nonsense I asked my doctor for different medication, whereupon he prescribed Eliquis and Metoprolol. The bleeding stopped but the Metoprolol made things even worse and I stopped taking it and/or Sotalol altogether.
Regrettably, the chemicals seem to have permanently damaged my heart and my doctor has run out of suggestions. I mentioned ablation after reading about it here, but he felt that is not an option because it is too intrusive and whatever.
I asked about a pace maker but he again declined that option as not being appropriate for me. And this is where I sit now: with a permanently damaged heart and without a workable cure. During the day I am tired and listless and without energy and dizzy, so that I cannot ride my bike anymore.
Every night I hope that my heart will finally stop and put me out of this misery.
Hubert, I’m so sorry to hear about your experience. If you have the means to do so you should seek other medical opinions and options. I’m sorry that you are so disheartened. I pray that you find friends and family to help you through as you search for your answers.
God Bless
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