Filed under: Issues | Tags: afib, atrial fibrillation, congenital, heart disease, paroxysmal atrial fibrillation, stopafib
I remember drinking five Diet Cokes that day, which was excessive caffeination even for me. I couldn’t sleep and it was 3 a.m. I watched re-runs of “Roseanne” on Nick-at-Nite in an effort to bore myself to sleep. Yet the longer I stayed awake, the more energized I felt. It was an insane adrenaline rush… and then the chest pains started. They weren’t scary as I thought they would be. More of a dull yet incredibly uncomfortable pain, kind of like a hamster on a rusty wheel in my chest. I decided to wake up my roommate and have her take me to the emergency room anyway.
That was my first bout of atrial fibrillation (afib), or as my friends first responded, “atrial what?” It was almost six years ago and that five days I spent in the cardiac ward was terrifying. I felt awful, like I had taken methamphetamines and gotten hit by a truck at the same time. The cardiologist kept saying, “She is so young! But she is so young!” and the heart monitor alarm kept going off and my closest family was hundreds of miles away. I thought I was going to die. I was so certain that I was going to die that I didn’t even call my mother. I didn’t know what to say.
Obviously, I was fine. Thankfully the amazing doctors determined that my afib was likely caused by my thyroid levels being off, at least that time, and immediately began to regulate it. Future episodes (oh, countless awful episodes) have proven that there’s something else going on to bring on my afib bouts. I quit caffeine cold turkey after the first episode. Was it stress? Was it alcohol? Was I dehydrated? It was only two years ago that I found out that I got this from my father, after he passed away from complications of procedure that was to fix it.
Enough sob story. What is afib? According to StopAfib.org:
Atrial fibrillation is a misfiring of the electrical signals of the heart that is characterized by heart palpitations, irregular heartbeat, and typically a fast heart rate. Afib comes on with little or no warning, and for no apparent reason, and can feel like having a flopping fish in the chest as the heart races and jumps uncontrollably.
According to the Mayo Clinic, more than five million Americans now suffer from atrial fibrillation, and by 2050 at least 16 million Americans will have afib as it overtakes aging Baby Boomers.
Once considered benign, this cardiac arrhythmia can double the risk of death and increase the risk of stroke five-fold. Afib is known to cause at least 15–20 percent of all strokes, and up to one-third of strokes of indeterminate origin are thought to be caused by atrial fibrillation. Stroke is the third most common cause of death in America and the number one cause of permanent disability.
I have what is known as paroxysmal atrial fibrillation, which essentially means that it’s like a ticking bomb. It can happen anytime, anywhere, no matter what I do. The bonus of that is I don’t have to live with afib all of the time. There are millions of people who suffered with afib and its side effects (awful headache, exhaustion, nausea), not to mention its terrible risks, on a daily basis. There are also many others who feel palpitations in their chests and discount it, never seeing a doctor or cardiologist, not realizing the risks that are associated with this frustrating disease.
The emotional side effects of living with paroxysmal afib are huge. Every time you pack a bag to travel, make a long-term plan, look forward to an event, or get ready for work you’re terrified that your plans are going to be destroyed due to an unexpected case of afib. You feel very isolated and scared because no one understands the disease. After dealing with a bout and (thankfully) getting better each time, your friends become desensitized. They don’t worry when you have chest pains anymore; it’s tantamount to a cold. Only on your end, every time is just as scary. Every time you worry that’s the time you’re going to have a clot or a stroke.
I am living proof that afib is not a death sentence by any means. I live a fairly normal life for a 35-year-old woman. I hang out with my friends, I travel, I exercise and I even have cocktails. I have to take a host of preventative medications, of course, and also have to do other things that are critical — take magnesium, stay hydrated, avoid caffeine and exhaustion. None of it is certain to help me avoid afib but it does help. And I hate this disease so much I will do almost anything to help avoid episodes.
The reason I am writing this emotional diatribe now is because September is Atrial Fibrillation Awareness Month. To those people who have had palpitations or chest pain and sluffed it off as nothing, or just waited for it to go away, I urge you to consider calling your doctor next time. It may not be afib, but why take the risk? One of the goals of Afib Awareness Month is to help with early detection so afib-related strokes can be diminished. My hope is that if you didn’t know about afib before, now you do. And if you know someone with afib, please never get desensitized to the disease, because your friend who has it never can be.
Several articles about afib can be found at StopAfib.org. The organization can also be found on Twitter.
16 Comments so far
Leave a comment
<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <pre> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

I am really happy that you come out the other side of each attack :) You are one of my favorite internet people, and I haven’t gotten a chance to meet you IRL yet because of afib killing your plans. allow me to shake an impotent fist in its general direction on your behalf by sharing this alloverthedamnplace
Comment by Leslie Poston Sep 22 09 @ 9:20 pmThanks Leslie. I appreciate your support a great deal. I hope that I’ve been able to bring some awareness over the time that I’ve been online talking to folks. It’s hard for me to talk about medical issues as I am fiercely private in general, but if I can help someone else not to be blindsided by it, then by all means. :)
Comment by Jennifer Leggio Sep 22 09 @ 9:21 pmWow, thanks for that info. I didn’t know all that. I know you have enough friends to help but please keep in mind that John and I are not that far and ANYtime you need us you can call. Internet friends can be family too! (Plus we did meet once.) But seriously, we are close and can drive real fast if necessary. Even if you just need someone to sit with you cuz your feeling icky. I know Clarabelle is great company, but sometimes a hand is nicer to hold than a tiny paw.
Comment by Terre Pruitt Sep 22 09 @ 10:40 pmTerre, thank you so much. I really appreciate your support. It means a lot. I will definitely let you guys know should I ever need anything. And I’d be happy to return that favor. xoxo
Comment by Jennifer Leggio Sep 22 09 @ 10:45 pmShh! Don’t tell John that, he will start making stuff up (that we need). You know what a “stalker” he is! (Ha, ha, ha!)
Comment by terrepruitt Sep 22 09 @ 11:03 pmJennifer,
Thanks for sharing your very personal journey with afib. While it’s different for each of us, it’s hard on all of us. That flopping fish in our chests is hard to ignore, and makes it difficult to function normally.
Thanks for helping others know that atrial fibrillation is not something to fool around with because of the risk of blood clots and stroke. If we can get it diagnosed and treated early, we can save lives. Thanks for spreading the word.
Bless you!
Mellanie
Comment by Mellanie True Hills Sep 23 09 @ 10:49 am[...] Read: From the heart, about the heart: Living with afib [...]
Pingback by ZDNet Blogger Jennifer Leggio Talks About Living with Atrial Fibrillation | Atrial Fibrillation Blog Oct 5 09 @ 11:10 amYour ability to blend personal with professional is staggering, and rarely matched in the online world. Thanks for everything and continued tenacity your way as you work to overcome this temporary condition. I say temporary because I, too had this diagnosis for approx. 18 months. It was an incredibly difficult struggle, but through various holistic techniques I’ve been free of any attacks for almost a year now, except for one random episode. You can beat it :) Blessings,
Comment by tommy p Oct 5 09 @ 6:46 pmTommy, I appreciate your support and kind words. I went about two years without any issues and then bam, I got into a stressful relationship and a much more stressful job, and it’s been a fight ever since. Need to learn to take more time for myself and treat my heart better. I am glad that your issue has gone quiet, and hope it stays quiet.
Comment by Jennifer Leggio Oct 5 09 @ 9:59 pmThanks Jen. You know, one thing that helped a lot was meditation. Admittedly (at least for me) it was very challenging to develop a practice. Often I couldn’t last more than 5 minutes and my mind would just go crazy during that time. But when countless doctors and tests and “experts” couldn’t help me, I was able to develop a “last resort” mentality that gave me the motivation to just do it. Sticking to a schedule, I was able to work up to 20 minutes daily within a year and I know it had some connection with my improvements. Good luck and peace to you on your path :)
Comment by tommy p Oct 6 09 @ 7:08 amTommy wrote:It was an incredibly difficult struggle, but through various holistic techniques I’ve been free of any attacks for almost a year now, except for one random episode. You can beat it :)
Could you elaborate about the various holistic techniques you are using?
Comment by Georges Fair Oct 6 09 @ 8:02 amThank you
Thanks SO much for the blog. I am finally controlled by tons of Lopressor, Warfarin, and blood pressure pills. It is all those pills that are heading me towards Catheter Ablation. I am interested in what happened when your father tried to stop all the drugs with ablation.
Comment by Jean Jackson Oct 6 09 @ 8:25 amI have had A Fib for as long as I can remember. I’m now 60 and have had 2 ablations neither one worked but I am controled by metropol and diltianzim and very thankful for it. Not going to the doctor when I had symptoms was a huge mistake. Thanks for sharing.
Comment by Dedie Oct 6 09 @ 8:52 amJean – My father had a lot of issues. He had already had two heart attacks, he was diabetic, and he had chronic afib unlike my paroxysmal. So medication could not keep him in regular rhythm or convert him and they even tried electro cardioversion and it wouldn’t help. He had no energy, etc., according to my stepmom. So they tried ablation as a last resort. I know that it is a safe procedure, I just have an emotional hang-up against trying it.
Dedie – I am so sorry that your ablations did not work to relieve your afib. With hope we can get more information about holistic methods to help. Seems that StopAfib.org is a great resource for that
Comment by Jennifer Leggio Oct 6 09 @ 11:10 amHello Jennifer
I don’t know that there is a huge worry with Afib as long as you don’t have co-morbidities.
http://circ.ahajournals.org/cgi/content/full/115/24/3050
Overall survival of the 76 patients with lone atrial fibrillation was 92% and 68% at 15 and 30 years, respectively, similar to 86% and 57% survival for the age- and sex-matched Minnesota population. Observed survival free of heart failure was slightly worse than expected (P=0.051). Risk for stroke or transient ischemic attack was similar to the expected population risk during the initial 25 years of follow-up but increased thereafter (P=0.004), although CIs were wide. All patients who had a cerebrovascular event had developed 1 risk factor for thromboembolism.
Comment by Ben Oct 7 09 @ 10:35 pmJennifer,
I was diagnosed with a fib when I was 21 years old. Now I am 28 and have only had about four episodes but always converted back on my own. I consulted Dr Andrea Natale about having an ablation but he said my episodes where to far apart and that he would not recommend ablation yet. I just hope ablations and medications keep getting better in case I need them in the future.
Its always nice to know that you are not the only young person with a fib.
Comment by Jorge Legarreta Oct 11 09 @ 8:49 pmI hope you stay in normal sinus rhythm from now on Jennifer.