My One-Year Journey With Afib

My One-Year Journey With Afib

It was EXACTLY one year ago today, January 14, 2013, that I went into a local hospital to have a minor procedure done. I was as calm and peaceful----no anxiety whatsoever---as a person could be. The nurse was busy preparing things----inserting IV, checking BP, asking routine questions---then she checked my pulse on my wrist. She asked if anyone ever told me I had an irregular heartbeat. “No”, I replied, “I am as healthy as a horse. “ At 51 years old then, I exercised regularly and had done so all of my life. She said she wanted to get an EKG just to be sure. After the EKG, she returned to say I would not be having the procedure today because I had Afib.

The cardiologist came in about an hour later. He discussed it as probably being “holiday heart”. I had attended a wedding the previous weekend------and I drank my share of the alcohol. He suggested a TEE and cardioversion to get me back in rhythm. I said “Let’s do it!”

I remember the cardiologist shaking me, trying to wake me up. He said he shocked me three times but my heart was stubborn and wouldn’t return to NSR. He said he needed to see me in his office in three weeks. I left the hospital later that day with a prescription for Xarelto. Prior to initial follow up appointment, I read all I could in trying to learn about this condition. At the follow up appointment, the cardiologist suggested we could pursue a rate control strategy or a rhythm control strategy. I thought being born in NSR was a good thing, so why not pursue that? We agreed. Tikosyn loading at the hospital was scheduled for the following week.

Tikosyn loading went fine. I converted after the second dose. After leaving the hospital, I continued to exercise, with the good graces of the cardiologist. I always wore a chest strap heart monitor. I noticed my heart rate would always accelerate to the 200-220 range after about 10-15 minutes. I just continued to exercise throughout my 75 minute cardio routine. I had been completely asymptomatic with this defect, never knowing when my heart was in or out of rhythm. Seeing these spikes on the gym equipment gave me my first clue but I wasn’t really sure what it was at the time.

When I first brought this up to my cardiologist, he dismissed it, saying to keep exercising. I brought it up a couple of more times and finally sent him an email describing it. He scheduled me for a treadmill test. During the treadmill test, I began going in/out of Afib after just a few minutes. They stopped me after 9 minutes because my heart spiked to 229, even though I felt fine and was capable of much more exercise. The cardiologist reviewed the treadmill exam and said I definitely didn’t have any blockages but he thought I might have an accessory pathway and that he wanted to refer me to a colleague of his, an Electrophysiologist. The appointment was made for about a month later. I only saw him twice because he wanted to be the only person I saw---he didn't want to participate in having multiple practitioners---he said there were "too many cooks in the kitchen." The original cardiologist still said it was ok for me to continue my exercise routine at these high rates.

My wife had an appointment with her doctor on the day following my treadmill exam. She was stressed and described all that was going on. In addition to my problems, my mother had suffered a significant stroke in May 2013. We had moved her in with us in July 2013. Her left MCA was the region of her stroke. It took away all of her communications ability. She can’t talk or write. Additionally, there are some cognitive deficits but in general today, I think she understands most things and that she has really good thoughts that she wants to express, but she just can’t get them out. When she speaks, it is simply babble. The good news is that she recovered well physically. While her right limbs were once flaccid, they quickly recovered with rehabilitation and she is completely ambulatory today, albeit in a weak and fragile state. Her severe COPD also limits her movements. She is still with us today and is stable physically at the moment. I just pray for the miracle that she will one day talk intelligibly again.

Anyway, at that doctor’s appointment, my wife described my condition. That doctor said she wanted to see me because I should not be exercising daily with a heart rate of 220. I saw her the following day and she recommended I get a second opinion from another doctor in another town. She set it up with another cardiologist/EP in another town with a hospital associated with the University. She also had me get an Echo within a few days. The Echo showed normal structure, but the reported ejection fraction was 51%. I had no idea what that meant at the time. Normal is apparently 55-70%. I later met with the original cardiologist who explained reading the Echo is somewhat subjective and that it appeared normal to him.

The new cardiologist/EP suggested the Tikosyn wasn’t doing a good job (because of my breakthroughs during exercise) and changed me to Flecainide. Let’s call this new cardiologist/EP “#2”. We will now call the original cardiologist “#1”. She sent me home with a 24 hour holter monitor and told me to exercise, I guess not really believing the things I said---or at least wanting to verify the high heart rates I described to her. I used it for a day and sent it back. After they read it, they told me that they were referring me to one of #2’s colleagues because my heart rate had reached 239 during my exercise while I was wearing the holter monitor. Additionally, they doubled the Flecainide from 50mg BID to 100mg BID. The scheduled me to see an active practicing E/P. Let’s call him #3. Remember, #1 is local for me, #2 & #3 are two hours away.

I saw #3 and he scheduled me for a 14 day holter monitor. We reviewed the results at the next visit. Afib was present on every day but not all day. He said that he would perform an ablation if I desired, but if I were his brother, he would recommend waiting and watching for a while. We added Metoprolol ER 25mg daily to see if it would stop the spikes during exercise. It did help initially.

We met again a few months later and had the same identical conversation, primarily because up to this point, I continued to be asymptomatic. I had bought an AliveCor device in early October and I showed it to him. He recognized it and said he had many patients using it. I told him that about 1/3 of the EKG’s I made showed Afib. He again offered me an ablation if I wanted, but said he would watch it and see what happens. I asked him if we could repeat the 14 day holter period and get another Echo. He said yes and gave me the orders. I told him I didn’t think Flecainide was very effective at maintaining my heart in NSR. We increased Flecainide to 150mg BID and Metoprolol ER to 25mg BID.

In early November I had the new Echo. The technician and I established built up a rapport. She shared with me that ejection fraction was only 46%. I met with #1 two days later as a result of a previous long-ago scheduled appointment, but I made sure he received the new Echo in time. He seemed slightly alarmed at the lowered ejection fraction and suggested an ablation was likely the best route for me. I met with #3 (E/P) in mid-December. We reviewed the 14 holter period, which showed increased Afib burden—25% of the time. Additionally, there were multiple strips where he said my heart “paused” for 4 ½ to 5 seconds. I told him I had infrequently experienced on occasion when my vision would begin to close in for a second or second and a half----accompanied by a loud buzzing in my ears----he said that was when my heart was “pausing”. Other than that, I continued to be asymptomatic. I continued to exercise at the gym and play tennis. He suggested it was likely from the meds and recommended I reduce dosages to the previous level---100mg Flecainide BID and 25mg Metoprolol ER once daily. I did. In fact, I had associated some other negative side effects with the Metoprolol so I have actually lowered it to one-half of the 25mg pill daily. I’m not sure if the 12.5 mg daily is having any positive or negative effect because honestly, I’ve stopped exercising since mid-December because it got to the point where exercise always initiated Afib for me and then my heart would be crazy for most of the rest of the day……if not all day. During this late December 2014 appointment, #3 was much more forceful. After seeing the ejection fraction at 46%, he said I absolutely needed an ablation. My heart was spending more and more time in Afib and it was getting weaker from the Afib. I left his office feeling poorly.

I’m not sure exactly when I discovered the Afibbers website……it was a few months ago. However, after making my first post in October, it was clear what a great bunch of people reside here and share their great insight and love in an effort to help others. I am forever grateful to you all for that, especially Shannon, Jackie and George, all of whom quickly reached out to me.

Shannon took time out of his schedule to have an almost two hour phone call with me. He gave me great advice and much encouragement. He shared his great wealth of knowledge and was very kind and forthcoming. Jackie and I have exchanged so many emails…..she has given me so much personal advice on eating and supplementation, as well as encouragement.

After finding Afibbers.org, I began to make plans to switch out of my HMO to BCBS so I could leave my local area in preparation for the best E/P I could find. Obviously, everyone here in Afibbers.org is partial to Dr. Natale. A call to St. Davids showed that the first available appointment I could get was at the end of February 2015. I was fine with that because things were going ok……this was before the last appointment with #3 in December. After meeting with #3 in December and receiving the grim prognosis, I emailed the staff at St. Davids and asked to be put on the cancellation list. They are awesome too…….Thanks Barbara & Shirley!

Shirley quickly responded that some new dates had opened up at the end of January. I responded that I would take them. I will drive to Austin, Texas, on Sunday, January 25. My consultation with Dr. Natale is scheduled for Monday, January 26. The ablation is scheduled for Tuesday, January 27. I’ll hang around Austin for a few days afterwards as they have requested, just to make sure things are ok.

I will keep you all apprised of my progress afterwards, at regular intervals, but I promise not to be too burdensome to the forum. I’ve tried everything I have knowledge of in order to have an impact on my Afib. I’ve thought many times I had found a clue only to have it blow up and not have any effect whatsoever. I’ve had times when my heart would be in such a perfect sinus rhythm and then go into Afib for no apparent reason. After one year of receiving the advice from many professionals and trying a cornucopia of remedies, I’ve simply come to the conclusion that I cannot correct this Afib on my own. It will require some intervention. I’ve decided on the Natale ablation.

I write this open letter to you all today for a variety of reasons. First, it is a bit of a catharsis to talk about it. However, I know there are many people who are like me, in that they just happen to come across this website, and it helped me to read about other people’s experience. If I had been able to control my Afib with any medication, any diet, any supplementation, or any other external factor, I would not be having the ablation. I’m disciplined enough to do that. However, I can’t find anything that works reliably. I have Afib every day…..sometimes all day….so I really don’t feel like I have much of a choice. This appears to be the last opportunity for me to get my heart back in NSR…..so I’m taking it. I know there are risks associated with the procedure, but I’ve limited my risks as much as possible by selecting a very experienced practitioner who is highly skilled, and the procedure will be performed at a high volume center, where they are very capable of handling my situation and any complications that may arise. Therefore, I am completely at peace with my decision to go to Austin for the ablation.

I’m not anxious about the procedure. In fact, I’m excited. The burden of having this Afib has been quite worrisome---even though I can’t feel it when I’m in Afib. In the beginning, it wasn’t so worrisome because I thought I would defeat it with medication or diet or exercise or something. As time passed and medications failed and the Afib burden increased, the anxiety increased, especially after the last Echo showed the reduced ejection fraction. All of the doctors said that meant the heart muscle has been weakened from the increased time my heart has spent in Afib. At 52 now, and normally a very active person, I’m not ready to concede to a future of Afib/CHF if I don’t have to.

Best wishes to you all for taking the time to read, especially those of you here are professional “Afibbers” who share your knowledge and time for the benefit of others who make their way here. You all are truly a “Godsend” and I hope your realize how much others appreciate you!

Cheers! Here is looking forward to a great 2015 for all of us!!! I am looking forward to the day when I can discard the anti-arrhythmia and anti-coagulant medications! Keeping my fingers crossed.

Ken

Ken, that's quite a story. I think you are finally on the right track with your ablation appointment with Dr. Natale. Good luck and may the force be with you.

Jim

Best of luck Ken on your upcoming procedure with Dr. Natale. I had my ablation done by him 14 months ago, and I've had perfect beats since! And that's saying something, as my heart was a real mess. I look forward to hearing how you're doing very soon.

Mailman,
Thanks for the positive vibes! I appreciate it.

Onewaypockets,
Thanks for sharing your success. It makes me feel better to hear positive results.

Ken

As soon as you said that your HR was 220+ every day while exercising. I knew where the post was leading. That is too high of a HR and can lead to Tachy-Cardia induced Heart Failure. I went all the way down to 20% before my AFIB was diagnosed.
It took a little over a year of NSR, or AFIB with rate control to bring my EF back up to around 60%. It was the high HR that caused my Weak Heart (EF). I never did get an Ablation, (got multiple ECV's) but I was one of those blessed with being able to easily control my HR while in AFIB. Even in AFIB, my rate never went over 120. The biggest cause of your poor EF of 46% was the high HR caused by the AFIB, not the AFIB itself. I am surprised that your doctors did not try harder to get some sort of decent rate control for you. It is well known that weakening of the Heart can occur with HR's over 100 for as little as 24 hours of duration.

The Dr's probably told you not to take Flec at this point because of your poor EF (weak Heart) Flecainide actually weakens the Heart further, and is not given to patients with HF, or a history of a weak Heart. I was getting Echos showing EF of 60-65%, then I went on the Flec, and my EF dropped to 55-60%, now that I stopped taking the Flec, my last EF went all the way up to 71%. So you might also consider that it was the Flec that caused to lower EF. You were on Flec prior to the last Echo right?



Edited 1 time(s). Last edit at 01/14/2015 05:56PM by The Anti-Fib.

Anti-Fib,

Thanks for jumping in and sharing your experience.

Actually, I'm still on the Flecainide. In the December office visit where we reviewed the 46% ejection fraction, the E/P suggested reducing the Flecainide from 150mg twice daily to 100mg twice daily. I've done that. He also suggested reducing the Metoprolol ER from 25mg twice daily to 25mg once daily. I've actually cut that in half. I'm only taking half of a 25mg pill daily.

Did the ECV's work for you for a long period? I'm just curious how you have managed to avoid the ablation.

I have Afib every day. Most of the time, I wake up in NSR. Later in the day, I often go into Afib. Sometimes it goes away but most of the time I go to bed with it and convert during sleep. I can't identify why or why not. I can't even feel it. If I didn't check the irregularity of my pulse in my carotid artery or use my recently purchased AliveCor device, I wouldn't know I was in Afib. I've tried systematically identifying/eliminating factors and nothing works for long. As I said in the original post, I've conceded that I can't control it. That is why I'm headed to Austin.

Most of the time, even while in Afib, my heart rate was controlled. I began the Metoprolol as an effort to keep the spikes from occurring during exercise....it seems that exercise frequently induces my Afib. It worked for a while, but then became less effective.

Thanks again for sharing.

Ken

I am not a Dr. , but I am certain that if you ran this scenario by other EP's they would tell you to get the hell off of the Flec.
Flec has been shown via studies to cause a 5-10% reduction in ejection fraction even in a healthy Heart. There is all sorts of warnings not to give it to patients with HF. PIP use of Flec may still be an option, but you appear to be converting on your own. No need to use Flec PIP (high dose to convert) if you are already self-converting. The Flec isn't working anyway is it? Also Flec is a "use-dependent drug" that means that the faster your HR is, the more effective the Flec will become. That is bad because the Flec could be causing the lower EF, and the faster your Heart is beating, the more pronounced the side effect of weakening the contraction of the Heart will become.

Maybe there is a trigger for you to identify, but you just weren't able to pinpoint it yet.
It took me 4 years to realize that gulping down cold food like smoothies, or fozen yogurt was a trigger for me.
In my case I know that my electrolyte levels do change from when I wake up, compared to later on in the day, Not sure why, maybe because I drink alot of water.

What fluctuates during every day that could be causing your AFIB? Cortisol levels rise and fall (high AM, low PM), Electrolytes? Off the top of my head with the limited info you provided, I think some sort of Hormonal or electrolyte imbalance that is exerbated by intense exercise may be the culprit.

I assume that you have tried using Magnesium? that helps with electrolyte imbalances. The Mg really helped me, and was more effective than any of the AAM that I tried.

It would be hard to identify a trigger unless you know right when you go into AFIB. Have you tried some sort of monitor that would alert you to the AFIB, right when it started?

You asked about the ECV's? Doesn't sound like yoou need any of those, they are for if your episodes last for days, and you can't convert on your own. It's a long story how I succeeded without getting an Ablation, and I had to go against the better recommendations of my Doctors. They are sort of dumb-founded now, but they are not education from this site like I am.

I also exercise alot, and have found Bystolic a (cardio-selective) beta-blocker to very helpful, as it does not cause nearly as much drowsiness or sedation.



Edited 2 time(s). Last edit at 01/15/2015 04:25AM by The Anti-Fib.

Anti-Fib,

You asked if the Flecainide was effective......I don't think it is and I don't think it ever was since beginning it in May. The initial dose of 50mg twice daily was quickly accelerated to 100mg twice daily after they saw the 239 heart rate during the exercise while using the 24 hour holter monitor. I never really had any effective way of knowing how much Afib I had during those early months.....nothing to confirm whether or not I was in Afib. Doctors visits where I had EKG's were about 50% NSR and 50% Afib. In and out.

I will research your suggestion that Flecainide lowers ejection fraction by itself. That could be the case here....maybe I should stop taking it altogether. I've read the pre-ablation literature and it calls for you to stop taking all anti-arrhythmia meds several days in advance of the procedure anyway.......so I will be stopping the Flecainide in a week..........Oh my, what would I do if I stayed in constant NSR after I stop taking this stuff? Makes me want to stop taking it right now.........hmmmmmmmmmmmm. I think I read early on when first taking it that it takes several days for Flecainide to build up in your system to get to the therapeutic dosage........probably takes several days to get out of your system too........another item for me to research today!

I feel like I've tried everything. I've avoided wheat, sauces, MSG, processed foods, carbohydrates.........I've drank so much Waller Water I should be floating. I've been also supplementing magnesium with Natural Calm powdered drink and the Doctors Best Chelated tablets. I had the Exatest done (at my expense) and it did show that my magnesium levels were at the low end of the acceptable range. Jackie has shared a great deal of her time with me in giving me great nutritional/supplementation guidance. Yet, the Afib seems to come and go as it pleases.

Sometimes, I think I have identified a factor.......only to have it fail when trying to repeat it. Again, I'm at a loss for solving this puzzle......there are just way too many pieces that fit together in too many different spaces......

I had a nuclear stress treadmill test last Friday. I exercised and felt fine even though my heart was in Afib. The cardiologist said there was no way I have any blockages......that I couldn't exercise at that level with a high heart rate without having pain if I had blockages. So, I get another clean bill of health in another area. His parting words were that I had an electrical problem and he hoped the future ablation would fix it. I hope so too.......nothing else has worked up to this point.

Thanks again for sharing the points about Flecainide. I'm certainly going to investigate further.

Best wishes.

Sincerely

Ken

Hi Ken - thanks for your detailed report. Your mother is certainly blessed to have such a caring son.

I'm looking in our correspondence for your Exatest results and can't seem to locate...Can you either post or send to my by email? Thanks. It would be good to know the specifics because if the IC magnesium is consistently low, then potassium can't do its job of stabilizing electrical conduction - this is critical whether or not you have ablation and would be helpful to help ensure that your ablation is successful - long term.

Jackie

Jackie,

Done. Check your email!

Ken

Ken

You should be able to know if your in AFIB or NSR, by simple pulse check. When I am having issues, I pulse check often.

Yes, the Flec can make things worse. The therapuetic level is gone once you stop the drug for several days.

I did alot of research on the Flec, because at the time, it was the only option for me if I wanted a AAM that did not contain a Beat-blocker, and I had had a history of extreme Heart Failure.

Anti-Fib,

Yes, I check my carotid pulse frequently throughout the day. Today, I can pretty much tell by the pulse check. Early on when I was completely ignorant to this condition, I really didn't understand as well. Being asymptomatic during the actual Afib only exacerbated the problem of me identifying it. Today I use the AliveCor device to confirm when I think my pulse is slightly irregular. It was a pretty cheap tool for the help it gives me. I bought one of the Iphone 4 models when they were clearing them out for $49. I would highly recommend this device for people who are new to Afib and trying to learn how to identify it, especially if they are asymptomatic.

I received the instructions yesterday from Natale's office telling me to stop the Flecainide 5 days before the procedure. I'm guessing the purpose of that is to have it completely out of my system so he can see my heart in its full natural glory. I might stop a little sooner......like this morning!

Hope you have a great weekend!

Ken

Ken,

Thank you so much for your detailed report. It is certainly helpful to learn the experiences of others. You have made a very wise decision to move forward with Dr Natale. As you can imagine he is a very busy man so I strongly suggest you be well prepared for your consultation with questions that are important to you. He was only able to spend about 10 minutes with me. However, other members of his highly qualified staff answered all my remaining questions. I think you will be impressed.

I wish you well and look forward to your future reports of success!

Craig

Craig,

Thanks for taking time to comment and the well wishes.

I feel confident in moving forward with Dr. Natale. I will be prepared for our office visit......I know he is a very busy practitioner and I wouldn't have it any other way......his time spent healing people in the Cath Lab is too valuable to waste away in the office setting.

I am excited about my 869 mile drive to Austin next Sunday, January 25th. Consult Monday. Ablation Tuesday. I can't wait to get it over and enjoy the success that so many others on this forum have described.

I went back and read some of your previous posts. It appears that you had your Natale ablation in May 2014. You said early on that you had an increased resting heart rate over what it was normally prior to your ablation. Has that reconciled for you over time and your resting heart rate returned to the level it was prior to ablation?

Do most patients who are ablated for Afib have the same experience? Anyone one can feel free to comment on this issue......

Would you mind telling me how things are going for you today, with regard to your ablation? If you don't want to post it here, feel free to PM me.

Again, thanks for sharing.

Sincerely,
Ken

Ken, my resting heart rate went from the 50's to the 70's after ablation. It took over a year to get back to where it was. I think that is pretty common and doesn't have a negative effect.

Jim

Mailman,

Thanks for the input!

Ken