My Journey... Continues...

Hello Everyone, my name is Rich, I am a 60 year old male and have had heart rhythm problems since I was a teenager (although, I honestly believe they were present even as a preteen). I am a first time poster, but have been getting comfort and encouragement from this forum for years. Whenever I would feel defeated, like I couldn't take another palpitation, or like I was the only one in the entire universe dealing with this, all I had to do was come to this site and I would find comfort, hope, encouragement, and strength in the stories, This is not a "misery loves company site, but rather a "don't give up, there is hope" site. I would like to finally share my journey in hopes that it will give someone else strength.

I first noticed my heart rate would become extremely fast when exercising when I was 14 years old. I was an avid hockey player and it would jump from the low 100's to nearly 200 BPMs w/o warning and stay there for anywhere from 20 minutes to an hour. I never passed out or had chest pain, and I would usually continue to play. As I progressed in age, so did the frequency of episodes. By the time I was in my late 20's it could be triggered by lower level exercise (walking), or even movement at times. After numerous EKGs, stress tests, Holter's, it was finally captured in 2000 and diagnosed as SVT. I underwent an ablation the same year. I considered it a success as I had no more episodes of SVT, however, I developed sever, frequent palpitations immediately after the procedure. Like most of you on here, I was told they were benign, not to worry about them, and to live my life. Well, easier said than done, right? I stopped working out, gained 40 lbs, became afraid to lave the house, stopped taking my kids places, and was depressed. I tried to maintain a brave face and was able to continue working, but I was always in fear and on guard.

As I got into my late 40's the palpitations increased in frequency, and I became symptomatic with dizziness, and they would take my breath away for a second or two. In 2012 I found a very prominent EP here in VA @ UVA who did a "PVC hunt" w/o success... nothing found, no burns. Fast foreword to 2013 while at work, (I am an RN and was working in the ED) I went into afib RVR. I was admitted and converted overnight with the help of Diltiazem. A very respected EP who evaluated me recommended an ablation because "once you have an episode of afib you are going to have another." I underwent ablation #2.

For six years after that ablation I had no afib and a reduction in palpitations. Then the afib and palpitations returned with a vengeance, heck, there was even some bi and trigemini thrown in for fun. My EP said this was not abnormal and suggested a "touch-up" which he did in 2020. That was ablation # 3. I new almost immediately that it wasn't successful. None of my symptoms improved, and some actually became worse. It was horrible. I was in and out of afib, bi and trigemini, PVCs, PACs, no energy, and even mild physical activity would put me into afib. At this point the EP started talking about amiodarone. I refused as I did not want to deal with any rhythm control drugs.

After some more research I found another very respected EP at the University of PA in Philadelphia. He agreed to see me and said he felt he could help me. So, ablation #4 was performed in 2021. Well, the first few months after were horrible, filled with all kinds of ectopy and weird rhythms. Things settled down a bit about six months after the procedure. I had no more afib, but a ton of ectopy, but I got on with my life, glad to be out of afib.

Then, on January 22, 2023, I went into atrial tachycardia at a rate of 130. In the ED i was given IV metoprolol which didn't touch it. The cardiologist on call happened to be my EP. He came in to see me and suggested an immediate ablation. He said a-tach is hard to ablate, but he could do it since I was in it. So to the cath lab I went, that day, for ablation #5. Well, as soon as he got set up and was beginning the procedure I converted to a NSR. He said he did burn an area he suspected was causing it. I was placed on flecainide and discharged.

Since then, I go into a-tach numerous times per week but at a lower rate (102), I continue to have a lot of ectopy, and I can't do any physical activity w/o triggering a barrage of them. Well, after a few months of serious depression over my plight, I decided to seek out the world's best EP. I did not care if I had to travel around the world... I was not giving up!

Well, you all know who's name came up as the very best... and I am overjoyed to say that I have my 6th ablation scheduled for January 4th, 2024 with Dr. Natale! Although, I am excited and very hopeful, I can not say that there isn't a part of me that is expecting the worst and that I am "unfixable." However, I will keep the faith the best I can, and remain hopeful that I will finally be able to have my life back.
Thank you guys for all the info and stories you provide here. It has been helpful and comforting beyound words.



Edited 1 time(s). Last edit at 11/09/2023 01:02PM by RichS63.

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RichS63
excited and very hopeful, I can not say that there isn't a part of me that is expecting the worst and that I am "unfixable." However, I will keep the faith the best I can, and remain hopeful that I will finally be able to have my life back.

Welcome! I guess you will have read Carey’s story above about how it took 5 ablations (as I remember) before he went to Dr. Natale and was “fixed.” There are a lot of Natale graduates here so don’t hesitate to contact us if you feel like it. Exactly one year ago today I was lying in a bed at Saint David’s preparing for discharge after a complex ablation with Dr. Natale. So keep us posted on how you are doing.

Thank you, Daisy. I have read Carey's post numerous times and it always helps me to remain positive and hopeful! You all are amazing! I will definitely keep the forum posted on my success!

In your 5 ablations has anyone isolated your LAA? That has proved to be the source of pesky arrhythmias for a number of us. Dr. Natale had to isolate my LAA a year ago and then put in a Watchman last April. While the Watchman is an extra procedure, it does give extra security for stroke prevention and, after LAA isolation it is really necessary as otherwise you would be at risk if you needed to stop your anticoagulant for a medical or dental procedure. So don’t be surprised if he finds that he has to isolate your LAA.

Hey Rich,

Given your early onset of arrhythmia (age wise), wonder if everybody has ruled out WPW (Wolff-Parkinson-White) syndrome. What you describe certainly is like what people I know with WPW describe. WPW patients are prone to afib as well. Likely all the people you've seen have ruled this out, but I never assume anything...

Daisy, I am embarrassed to say that I do not know what has been done during my procedures. I never asked and they never told. I really just put my trust in them. I know the one I had at the university of Philadelphia was quit extensive and he did some work in the left atrium. Exactly what I am unsure. I could go through my medical records and find out though. I will do that this weekend.
May I ask how you are doing since your procedure?



Edited 1 time(s). Last edit at 11/09/2023 11:47PM by RichS63.

Most patients probably wouldn’t know what work had been done unless they asked for their ablation report. Some of us here have become Afib geeks in an effort to understand our situation and make informed decisions. I think that they would have told you though if they had isolated your LAA (left atrial appendage) as after that they would want to up your stroke prevention. Not many EPs have the skill to do it also. All the work in an Afib ablation is in the left atrium I believe, but it would be good to get ahold of your ablation reports to give to Dr. Natale, though he will reassess the situation once he gets in there.

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RichS63
May I ask how you are doing since your procedure?

Really well—no arrhythmias so far and I have just passed my one year anniversary. When Dr. Natale put in the Watchman in April, he checked everything again and did a few more minutes of ablating. In the months since my November ablation my HR had been in the 90’s (which is not uncommon after an ablation) but after those extra few minutes of ablating it dropped right back to my pre ablation rate. I am ever so thankful as I had had Afib for 12 years.

Daisy, I am glad you are doing so good! I am definitely going to go through my chart this weekend and pull it the procedure notes. You would think with me being a nurse I would want to understand at a deeper level what has been done, but I think it was enough for me to just have a general idea of what was going on. You have inspired me to have a better understanding of what has been done, though!
I am confused about something. I understand the purpose of the Watchman, but do not understand why you would need it if the expectation is you will not be in afib? It sounds like you only get it if you have the LAA ablated, also.

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I am confused about something. I understand the purpose of the Watchman, but do not understand why you would need it if the expectation is you will not be in afib? It sounds like you only get it if you have the LAA ablated, also.

The LAA generates 90% of the clots that lead to strokes. Isolating (ablating) the LAA reduces the circulation in it putting you at greater risk for clots being formed. They used to think that the stroke risk with Afib was directly associated with episodes but recent research is showing that both strokes and Afib share some common causal element, rather than an Afib episode setting you up for a stroke. Thus the absence of episodes may not translate to protection against strokes. Also, we are not always aware of Afib episodes—they are often silent—so even after a “successful” ablation you may be having silent Afib and not realize it unless you have a pacemaker recording everything (I do, and Dr. Natale receives a monthly report). Thus he will order a monitor at some point after your ablation to have a look at what is going on. You will also be asked to send a weekly Kardia strip to your nurse navigator and NP.

At present, insurance only pays for a Watchman in certain circumstances—the most common being not tolerating anticoagulants, though it has been covered for those who have had their LAA isolated as they cannot safely stop their anticoagulant for even a day. So there is a plus/minus situation with LAA isolation: it may be necessary to isolate it to stop your arrhythmias (or flutter) but then a Watchman is recommended and that is a separate procedure as the inflammation needs to resolve to get a good fit. On the other hand, I am really glad to have a Watchman for the extra layer of protection. Note: I am still in a half dose of Eliquis and this will be re-evaluated after my 6 month TEE which is coming up soon. At the first TEE he said that he would probably recommend that I stay on the half dose indefinitely as there is still that 10% of strokes not coming from the LAA.

Hi Rich.
You are very similar to me in noticing the beginning of this struggle as a teenager.
Excuse my ignorance but you say "For six years after that ablation I had no afib and a reduction in palpitations".
I thought Afib and palpitations are the same thing.
I am not up with all the terminology eg ectopic beats, PACs, PVCs
I have looked them up and I thought it was all Afib.

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Steven
I thought Afib and palpitations are the same thing.
I am not up with all the terminology eg ectopic beats, PACs, PVCs
I have looked them up and I thought it was all Afib.

Steven,

If you look at my post here, you'll see 3 graphs plotting heart rate of individual beats vs time. The first two graphs are of lots of PAC's. You can see a) there is regularity and b) there are normal beats in and amongst the PAC's. There are also some "slow" beats following many of the PAC's. These are compensatory beats. In other words, many times a fast PAC beat is followed by a slow compensatory beat. In these cases, the beat following the compensatory beat starts at about the same time it would as if the PAC/compensatory beat combination were normal beats.

If you look at the last graph, you can see an isolated PAC and an isolated PVC. The equipment used in these recordings (a Polar heart rate chest strap) does not "see" the PVC beat, so the combination of the PVC and the next beat show as very slow, about half the rate of the surrounding beats. If you look at PVC beats on an ECG, the QRS waveform is malformed, which is why the strap doesn't see it. Later in the third graph is afib. Afib beat rate or duration is randomly random. If you compare the afib to the string of PAC's you'll see what I mean. The PAC's are still regular.

Here is a graph of an ECG with normal and PVC beats. You can see how the QRS waveform is malformed. Also, the graph shows that the time between the two regular beats with a PVC in between is twice the normal beat time.

Great response, Steven!

Sorry, that should be great reply to Steven, George.

I posted a sort of reply with an ECG in the "Kardia Mobile Interpretations".
I thought latest activity would come to the first page of the forum.

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Steven
I posted a sort of reply with an ECG in the "Kardia Mobile Interpretations".
I thought latest activity would come to the first page of the forum.

Sadly, our software doesn't do that. Threads are listed in the order of the date of the first post in the thread.

I assume you are talking about this post. I agree with Carey. You could do the same thing of counting boxes I did here and either just look at the numbers or plot them. Both indicate that you are in afib. The PVC is by visual inspection of the QRS waveform and it stands out because the waveform is malformed.

Thanks George. You guys are so knowledgeable.