Cardiac Ablation for PVCs, PACs - Success Story, No BS

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Hi friends! New poster, long time lurker. Thanks to all of you for sharing your stories over the years!

I spent years Googling PVCs, PACs, and arrhythmia after I began experiencing them 8 years ago. I can feel each thump, each bump, each bigemic run. I have worn more Holter monitors than most, been to the ER over 50 times, had over 100 EKGs (ECG’s), 3 MRIs, the whole works. Over 6% of my heartbeats were ectopic. So I decided to finally have a cardiac ablation, and I wanted to write to everyone considering an ablation, those who live with this hellish problem doctors rarely take seriously and few ways to treat, much less cure, in order to give back to the community that helped me in the hardest timeswhen I was in bigeminy and couplets and SVT, laying on my couch waiting to die.

First: PVCs and PACs in a otherwise healthy heart won’t kill youthey just will not. I’ve spoken to 30 docs at some of the best hospitals in the country. They won’t. Sometimes very rarely they spin out into other issues that feel worse and if left untreated can be harmful. If your heart rate spins over 170 for more than a couple hours, go to an ER. If over 200 for more than a couple minutes, go to an ER. The other super scary VFIb sudden death stuffif it’s not in your family history, or you haven’t just had a massive heart attack with electrical complications, it’s not going to happen to you. It just isn’t. You’re fine. It just sucks. Calm down. Now is the time to be decisive. You can drive, eat, exercise (it sucks but I did it all the time), go for walks with your family, go on vacation. Everything. Staying inside won’t help the PACs or PVCs. Staying inside just lets you listen for them and curl up. Staying inside is actually worse for your health, in the long term. But you get to decide how you live your life. Me? Some days I stayed in, when I was in constant bigeminy. Other days I went out until I couldn’t take it anymore. But when I was out, I often forgot about them. I saw people and lived a life.

Second: No amount of drugs helped my skipped beats. Not fish oil, not four different types of magnesium, not beta blockers, not calcium blockers, not potassium, not COQ-10, not anything. What helped? Good sleep, hydration, exercise, walking. But mostly, a deep desire to stop letting them run my life. They’re terrible. I hate them. I pushed through them. You can too. There are hundreds of millions of people with skipped beatsalmost all of us, according to reportsand some people don’t go outside because of them and some people run in the Olympics. You get to choose.

I would go for weeks without skipped beats sometime. Months even. They always returned. I got what I call storms for weeks, endless skipped beats. Dark days. But I pushed through.

THE ABLATION: This is a no BS zone. I put off the ablation twice before I finally got it because I was nervous about someone burning my heart. I’d spent hours online reading the pros and cons. I read the possibilities of stroke and zapping through my heart. I scanned through all the success stories to read about people on their 3rd ablation. I talked to two friends who had ablations for A-fib. I worried about having a stroke, reacting to drugs, etc. Then came a particularly bad storm, and I told my wife, “Remind me of how I felt during this moment if I say I’m going to put off the surgery again.”

She did. I prepared for the appointment.

Preparation: I didn’t eat after midnight. I took a shower. I drank coffee, because I wanted those little b******s to start popping first thing, so they could detect them. Went to bed late, 2 am, because that always brings them on. I was calling down the storm.

The hospital: Got there at 5 AM. Yes, that early. They took 8 of us in at once. I got into a gown. They shaved my pubes and nipple hair and around my kidneys. But guess what? I wasn’t having A SINGLE SKIPPED BEAT. I got nervous, did pushups, ran down the hall, went to the bathroom to hop up and down. Nothing. If they couldn’t detect a skipped beat, they couldn’t burn. I would have to go through the whole recovery with nothing changed.

I was wheeled into the frigidly cold room 5 hours later. Three attendant nurses were there with the anesthesiologist. My electrophysiologist, who would be preforming the surgery, hadn’t arrived yet. He’d promised me they’d shoot me up with drugs that would make my arrhythmia start up before they went in, but that didn’t happen. I asked them not to put me completely out, because I had a cousin die at the dentist under anesthesia. They said they wouldn’t.

I was out like a light within 2 minutes of being in the room. Fentanyl. Before falling asleep the ceiling was crawling in waves.

I woke up just as they were applying pressure to the insertion site. I felt them suturing the wound with a single stitch. They told me not to move. They said they were able to get some bad beats and made the burn. I was elated. Then they shot me up with fentanyl, a massive 100 mcg dose that shocked the docs I spoke to in the room they kept me for 4 hours, to make sure there weren’t any complications.

In the waiting area I experienced skipped beats, which were normal. My heart felt like it was being squeezed, but the docs were right there & I was hooked up to monitors. Chest pain, wonked out on drugs, desperate. 5 hours later I was released. I got a car with my wife and headed home.

FIRST WEEK: You are now 90 years old. For 3 days, you will not be able to walk across the room without getting winded. You will have a giant knot in an uncomfortable place, several knots even, that you will monitor to make sure it doesn’t get bigger than a walnut. One doc told me a “fist.” The bruising will be nasty and run a bit down your leg, all over the place. You will believe you’re hemorrhaging but probably aren’t. You will be dizzy, anxious, nauseous maybe, and sore at the spot. This is normal. But I called the hospital at least 8 times making sure I wasn’t dying. Your heart rate will go 10 points above normal for the next 3 weeks, by the way (nobody told me thisit’s known). You need somebody to take care of you the first week. Docs might say you can go back to work after a week. NO YOU CANNOT! You need to take 3 weeks off work, minimum. Sorry, minimum. My mother came up to be with us. I could barely walk to the bathroom to pee, and I only showered once during the first week. Lay down, cue up Netflix, have someone make you food.

SECOND WEEK: I’m in bigeminy. I’ll be in bigeminy a lot for the next 4 weeks. I’ve read that it takes 3 months for the heart to heal, but I pulled by EP aside and told him to level with me. He said if nothing changes within the first 6 weeks, the procedure was most likely a failure. I have an Alivcor single-lead strip (INVEST IN THIS) that shows I’m not only throwing PACs and PVCs, and in bigeminy A LOT, but that I’ve DEVELOPED A NEW PVC SPOT! I go to my appointment at the Heart Rhythm Center. I show a PDF of the strip to my EP, who confirmed the new spot. “This wasn’t there before, I was unifocal,” I said. He shrugged. “That’s definitely a different spot. This will make another surgery a bit more difficult.” “Did the new scarring cause this?” I asked. “No, it’s in a different part of the heart.” They put me on a 24-hr Holter. I’m now playing Wii Golf for exercise. I cannot lift anything heavy, and shouldn’t try. I’m writing horror stories on my laptop and watching all the old Ingmar Bergman films I missed. There are 60 but I have time now. I cancel all plans for the month. This is my life now. I have to heal. I have to make my life about me for now.

THIRD WEEK: Bigeminy, skipped beats, andwhile I’m sitting on the couch, my heart rate flies to 170 beats per minute. Is it SVT, which is harmless but terrifying, or VT (V-tach), which is deadly? I call the hospital hotline but the on-call doc says they can’t tell unless they catch it on the strip. “Try to catch the next one.” So I do. It happens again 3 days later. Sinus tachycardia, they say. 120 bpm lying down. “It went to 170 last time,” I say. They shrug. “Is this related to the burn?” “No,” they say, it’s the PVCs and PACs throwing it into an abnormal rhythm. I’m exercising more, Wii Golf. I’m afraid now I will simply drop dead. I have made a huge mistake doing this to my heart. I have hurt my wife by becoming a burden to her. I am terrified. I schedule another appointment with my EP, and wait a terribly long weekend in bed with my heart going crazy.

FOURTH WEEK: I meet with my EP first thing on Monday. He assures me I’m not going to go into VT, that it’s incredibly rare in someone my age (42), much less in someone without other preexisting conditions. I cannot believe him. “How rare?” “You’re not showing any of the common morphology for any of these diseases. I’ve seen them before.” The Holter shows only 2% of all any beats are ectopics, with a few runs of tachycardia and only a single couplet. “Bigeminy often, but that’s a normal heartbeat for some people. YOU JUST FEEL EVERYTHING.” I ask him if I can go off the daily 325 aspirin, he says yes. I ask him if the surgery was a failure. He nods, “It appears so. But we’re going to start you on a new beta blocker, works for 25% of people. Later we’ll add flecanide, which will bring it up in the range of 65%.” I’m willing to do anything at this point. “And if that doesn’t work, we’ll return to ablation.” I have a plan. After a month of this mess, I’m more content that my new life is living with my arrhythmiathis is the new normal, and it won’t kill me.

THE NEXT DAY: I went off aspirin that day, which was 5 days ago, and something strange happened. I woke up the next morning, and I wasn’t in bigeminy. In fact, I wasn’t throwing any beats at all. I was cautious. I told no one. I worried that my blood was thickening, that het real healing had begun, the burn was clotting, and now I would have a stroke. I called the center. They assured me I was fine. Nothing in my history put me in the usual cautious category for a stroke. I went and did my own research, as many of you willrunning through the “Conclusions” section of NIH studies to see just how many people die of stroke after ablations. The truth? A very low number, much less than 1%, have strokes following ablations. They tend to be much much older than I. How many of those who have strokes die? Less than 5% of 1%. So I could have a stroke and still live? Didn’t even occur to me.

FIVE DAYS LATERI’ve had 12 skipped beats in 5 days. One of them threw my heart rate slightly higher. I haven’t been in bigeminy once. I’ve been walking miles in 90 degree New York City heat every day of the week to test my luck and push myself. I’m pushing all my buttons. I want to make sure my heart knows what I’m planning to do with it.

The PVCs and PACs aren’t gone, there’s just a lot fewer of them. Did the procedure work, or did I just past through another storm? I have no idea, but this shows me that I’ll have good days. It’s important to LIVE INSIDE your good days, and PUSH THROUGH the bad. I’m a scaredy cat, a worry wart, a very anxious person. I’m surviving. You will too.

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  • Posted

    Joe what a wonderful post you made.  You are so positive, you make me ashamed of myself, i get so worked up over PVC's and my fast heart rate at time, that, in reality, is nothing compared to what you have been through.  Thank you so much for such an interesting post.   

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  • Posted

    JoePub, thanks for that post, every word.  I'm in a similar boat and wondering what to do.  One thing, there may be hundreds of millions of people with frequent PACs and PVCs and such, but only mere thousands who are made physically miserable by the frequency.  And I am sick to death of doctors who can't even say a kind word, when you come in with it.

    I've been fighting with it to various degrees for about nine years now and had a couple of bad days just this last week.  But I guess it's true it won't kill you quick, anyway.  And you know more of the jargon than I've yet mastered, what I just know is that the details of mine just keeps changing.

    One more OTC thing I wonder if you have tried - taurine.  I'd been taking a low dose of it on and off, and it seemed to help, but I was off recently, had some problems, and decided to see what dosage people recommended.  Well for arrhythmias, maybe one 500mg capsule per meal, or more.  I tried that - and it did help.  NOT a complete fix of course, but even better than magnesium, anyway.

    Of course we all know, if current medicine *had* an effective procedure then all the doctors would be much more willing to *see* and *acknowledge* the problem when you're sitting in the office.  So I know that if I b***h and moan enough then they will push me through for drugs and ablations - but I'd better be ready to take what I asked for.  Heck of a condition, ain't it.

    Again thanks for your great post, and best wishes for you.

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    • Posted

      I thought taurine was helping for a few weeks until I get hit by a brutal storm of binary ectopics. I even stuck with it for a few more weeks, but no going. Bodies are different.
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    • Posted

      JoePub, it might be that way for me too.  It was definitely helping - until I had some of the worst attacks ever.  I'm still staying with it, for now.  If the attacks weren't already getting worse over time I'd never have tried the taurine.  Sure is (not) fun running experiments on ourselves, isn't it.

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  • Posted

    Hi Joe,

    Maybe we're on the same page, maybe we're not. But I have ectopic beats (PACs) and 6% is a good day!

    Ectopic beats be it PACs or PVCs are benign. They be annoying but in and of themselves are harmless. You do not need to take drugs for them, you do not need an ablation.

    The exception is when the ectopics trigger events such as Supraventricular tachycardia (SVT). That's when your heart races (mine goes up to 199) for seconds, minutes or hours. Many people can naturally terminate their episodes but sometimes you have to go to the ER. Even SVT is considered somewhat benign and some just decide to live with it. However, if SVT starts to affect your lifestyle, then drugs and/or SVT ablation should be considered. SVT ablation has a very high success rate of over 95%.

    So in summary, you don't need to do anything if it's just ectopics. If the ectopics trigger SVT then you can do nothing or take drugs and/or have an ablation. The ablation btw will not necessarily stop the ectopic beats but it will kill the electrical pathways that cause SVT meaning that the ectopics will no longer trigger SVT episodes.

    Jim

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    • Posted

      Yeah, I've had SVT, never a run that broached 200 yet thank goodness. To me SVT is scarier than PVCs. I hate doing Valsalva maneuvers, feels like I'm stopping my heart to restart it.

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    • Posted

      Hi Jx,

      I don't want to diminish anyone's symptoms because we all react so individually. But as mentioned, I have a lot of PACs (up to 10,000 a day) and I also have SVT episodes. Before the SVT I personally only found the PACs annoying and never considered drugs or ablation and nor do most medical doctors recomend either. SVT is another story because both of the unpredictability and the high heart rates that can end you up in the ER if you can't naturally convert.

      Jim

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    • Posted

      Joe, Don't I know it. Especially when you have an SVT attack in a public place and frantically look for some shelter where you can try Valsalva. I haven't had a bad SVT attack for three weeks now but last month was averaging 3-5 a week. If I go back to that frequency, I will have an ablation. BTW I've had some luck with the FODMAP diet. Don't know if that has been the difference but it might have.

      Jim

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    • Posted

      Ugh, yeah, I know that feeling. Bathroom stalls are your friend. 

      I've never heard of the FODMAP diet, I'll go check it out.

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    • Posted

      jimjames, if I were to go out and participate in any kind of active exertion and was hit by a major attack while heart rate was high, I am certain the results would be somewhere between falling down and instant death.

      I can't even get any of a bunch of PCPs and cardiologists to do more than shrug, even when I'm wearing a two or three wire monitor and capture some very clear events, and at least a few with a full seven (or nine?) wire EKG setup.  That is not helpful, that is not polite, and it is perhaps not honest and not competent.  I know they are following some "guidelines" from somewhere, but it is still NFG.  Doctor Google is ten times better than these quacks.  Doctor Google should bill Medicare for about fifty consultation fees!

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    • Posted

      The authority on FODMAP is Monash University in Australia. They have a website and Iphone App. I started the FODMAP diet 21 days ago and haven't had an SVT attack in 21 days. Maybe coincidence, maybe not but I was averaging several a week before. I also only eat now between 10am and 4PM. Two meals, bkfast at 10 and dinner at 4. That leaves lot of time for the digestive system to rest between dinner and bkfast. I'm also limiting fruits and sugars. Lost 10 lbs in three weeks without trying but that's also a good thing. It's not necessarily a gluten free diet but you are not allowed wheat. I used to eat 2-3 loaves of bread a week because I love bread. Truth is I really don't miss it now. I'll remember that about bathroom stalls should I have another event. I now carry around a 10ml Terumo syringe barrel. It duplicates the pressure used for valsalva in the REVERT trial for modified valsalva. You might look that trial up as well.

      Jim

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    • Posted

      That syringe technique is very impressive, almost as impressive as this diet. Congrats.
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    • Posted

      Joe,

      I couldn't find the Terumo 10ml syringe barrels in the U.S. but did find them on ebay where they were shipped from Great Britain. I did try a U.S. syringe barrel first but it was too difficult to move the plunger when blowing into it so not all 10ml syringes are equal in that regard. The Terumo's were what the researchers in the REVERT trial sent people home with. The other part of the Revert trial was raising the legs after blowing hard for 15 seconds. Obviously much easier with a second person to assist but I do the best I can if at home. One of those zero gravity chairs would be ideal where you could blow and then tilt back. Out of the house, maybe a good and willing Samaritan smile

      Jim

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