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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 times—when 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 you—they 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 stuff—if 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 beats—almost all of us, according to reports—and 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 this—it’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, and—while 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 arrhythmia—this 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 will—running 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 LATER—I’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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