Skipping Hearts? Meet Irene.
I met Irene through online postings we both made on a medical website related to arrhythmia. I’ve had ten years’ worth of learning how to handle PVCs, but back in December of last year I was having something more than PVCs. I wasn’t sure what it was, but I knew it scared the hell out of me. I made online posts, asking about what I might have, if it could kill me – you know, the usual. 
Irene replied to many of my posts as a voice of reassurance and knowledge. I always ended up feeling better after reading the things Irene had written in response to questions, and I thought you might feel better if I introduced her to you, too.
Irene is 56 and lives in Oregon. She’s semi retired, spending the occasional few days helping colleagues with wildlife rehabilitation, her former full-time occupation. As you might imagine, wrestling a beaver or a large owl can be pretty tricky, though she seems to make it look easy.
Irene has been living with arrhythmia since she was in first grade. She recalls “I was leaning against my desk concentrating on carefully writing the alphabet when my heart started to pound and race. My body was rocking with the rhythm and I quickly sat back. The sudden rhythm change didn’t bother me as much as the thought that someone may have seen me.”
As she grew up, so did her arrhythmia episodes and symptoms. “There were times that I went to bed with a bad arrhythmia episode. Not because I was afraid and trying to hide away. They were times when the tachycardia was pretty bad/fast and it wouldn’t convert on its own. After a half hour of that my chest would hurt. It seemed the only way to stop the arrhythmia was to lie down, sometimes with my feet elevated. It was years before a doctor explained the valsalva maneuver to me so I could stop the tachycardia on my own.”
In the 1970’s while living in Colorado, the arrhythmia finally got bad enough that Irene started taking Inderal, a beta blocker. The family moved to Oregon and life continued on it’s merry way. Irene’s palpitations and tachycardia made regular appearances all along the way, when one year a cardiologist suggested she consider a catheter ablation. But because she’d been living with her skipping and racing heart so long, and hadn’t felt constrained by it’s sometimes unpredictable behavior, she was hesitant.
But the doctor told her he thought he could make her life better than it was, so she signed on for what was to be the first of three ablation procedures. “The first ablation procedure wasn’t bad. The most difficult part for me was having the IV put in. The rest was pretty much a blur thanks to the medications they used. There was one point during the first ablation that I was feeling some pretty severe chest pressure, like a phone pole being pushed through my chest and out my back. I wasn’t able to speak up but they seemed to notice my discomfort and more meds were given. That’s the last thing I remember. The second and third ablations were even easier because I knew what to expect and they were a little more generous with the meds.”
While an ablation procedure is not risk-free, there is a very low incidence of complications with the procedure, which makes it a popular first-line option for some types of arrhythmia. Even so, ablations aren’t always successful. “After the first ablation I did have high hopes that my tachycardia would be gone. The cardiologist felt it was a success as well. But within the year I was having some tachycardia symptoms again. Eventually I went in for the second ablation. The cardiologist was very disappointed after number 2; he was unable to ablate the problem. I finally went in for a 3rd time. The notes mention that tachycardia was still inducible but was of short duration. That pretty well describes what I feel now. Still, it’s a major improvement.”
It’s the nearly lifelong experience with arrhythmia, holter monitors, event monitors and her three ablations that give her lots of credibility when answering other people’s arrhythmia questions. Her experience has also provided her with a sizeable knowledge base of the topic as well as empathy for those suffering from similar conditions. “Mostly what I see on the boards are people with PVCs or PACs that gradually are overcome with fear, that they may die or they allow the ‘heart hiccups’, as I call them, to disrupt their lives. I understand their concerns. Something strange is going on in their heart, the major organ of their body that keeps them alive. Once they have been thoroughly checked by their doctors and told there is no danger, I wish they could adjust more easily to this new rhythm. I admit, this is easy for me because it’s been a life-long experience. But many can’t seem to get over that hurdle. Then it becomes an anxiety issue and that needs to be handled differently.”
When asked what she would like to teach those who are fearful of these new sensations they’re having in their chests, Irene says “I wish I had the magic answer to ease their fears. It takes time. Some people have had their PVCs/PACs for a few years and yet still live in fear. I like to point out that they’re still alive and doing well. I’ve had mine for at least 50 years, probably more, and I’m still alive and doing well. Perhaps the doctors do know what they’re talking about when they tell us the ectopics are harmless. Then again, I’m one of the lucky ones since I’ve never had to adjust to this problem – I’ve always had it.”
One of the things that struck a chord with me when corresponding with Irene was how she seemed to just move through her day and her activities, pausing if need be to wait out an unusual rhythm episode, but then picking up right where she left off as soon as it’s done. Like waiting for an opening in a revolving door to get to the next place you’re headed. And with the same amount of emotion.
“Why do I live with my arrhythmias without fear? I do think part of it is the fact that I’ve never known anything else. Whether it’s living in a certain country, living a certain lifestyle (rich or poor) or living with a jumpy heart, you just become accustomed to it. That is a big plus for me. I also tend to be analytical and look at things as separate from me. Helpful at times but perhaps it’s a bit of denial too.
As I said, I understand the initial fear: your heart has been beating quietly for years and suddenly starts to skip or pause or surge into your throat. There’s that fear of the unknown. We all know about that. That’s when a trip or two to their doctor can bring answers and hopefully some peace of mind.
Then there are the folks that see doctor after doctor about their PVCs or PACs and still can’t seem to accept their heart’s rhythm. What I’ve noticed most often is they comment that they already suffer from panic attacks or anxiety. I have no answers for that because I’ve never had to walk that road. Getting nervous now and then is not the same as having an anxiety disorder. But to my non-medical way of thinking, the anxiety is the primary concern, not the PVCs. The PVCs are simply a trigger for the anxiety attacks. There’s no permanent fix for PVCs and a doctor shouldn’t be forced into that corner. That’s like having every mole/freckle on your body removed because some day one of them might become malignant. Well, maybe that’s true but it’s not practical to take such extreme measures for something that’s basically benign. So to me what the focus should be is treating the anxiety. But I’m not going to say that to someone. It comes across as insensitive and like telling them ‘it’s all in your head.’ It is a matter of perception but the results are real and just as painful to live with. I sympathize with their fears but pills and ablations are not the answer.”
Maybe it’s because Irene’s heart is so filled with family, friends and the grateful souls of the arrhythmia sufferers and wildlife she’s helped that it’s just too stuffed to beat normally.
by Jeff
