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From the heart, about the heart: Living with afib

WHITEHeartWoman_000I 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.


36 Comments so far
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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

Thanks 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

Wow, 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

Terre, 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

Shh! 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

Jennifer,

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

[…] 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

Your 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

could I ask what kind of holistic tec.you were on? My episodes are very random
any help will be greatly appreciated.

Comment by sabina

Tommy, 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

Thanks 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

Tommy 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?
Thank you

Comment by Georges Fair

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

I 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

Jean – 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

Hello 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

Jennifer,

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.
I hope you stay in normal sinus rhythm from now on Jennifer.

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Comment by bennymay

Hello everyone!!I was diagnosed with A fib end of Sept. 2009.Have been to ER three times since then. I have had several episodes at home and have worked through them.Each time I have an episode they are slightly different. I just had one today, and I got short of breath pulse shot up to 102, and bp increased. I contacted my local heart center. The nurse told me to take an extra metropolol and lie down. I sip on cold water, place a cool washcloth on my face and neck to help with the Bp lowering. I also lie down and listen to meditation tapes on my ipod. It seems to help but the whole time I am thinking when will this episode be over. I understand everyone being scared wondering how long it will last and when will you have another episode. Folks, I don’t know about you but I very much want to live. I want to see my grandchildren grow up (I am 60). I know that all of us have to learn to manage our A fib episodes in our own way. I appreciate the blog and get useful information plus I know that I am not alone in this fight!! Keep your hearts healthy and happy.

Comment by Peggy Kovac

Thank you all for writing. I’ve been in Afib since September 09. Had a cardioversion in November which stopped my heart for 30 seconds and brought the crash cart. I have tried Multaq
Metroprolal, Amiodorone, and a few other drugs, none of which has helped slow my heart. I tried to get an ablation but was told that Kaiser doesn’t do them for patients over 70. I was very active and happy go lucky before September, now I’m sort of in a vegative state. And NO coffee or alcohol. I just wish there was something else that might help.

Comment by Jeanne Jackson

I’d had little blips of a-fib and the occasional flutter here and there, but I never saw a doctor or did anything about it. Then one day I walked through some ant poison barefooted. A few hours later it set my heart off hardcore. They were about to zap me when I finally reverted to a normal sinus rhythm from the massive amounts of metoprolol and Ativan they had been giving me. The funny thing was they didn’t take to the ICU until I had reverted. The stupid swine flu scare had clogged the hospital and I had spent the whole night on an ER gurney with my heart randomly pounding away.

Comment by Zeke

Zeke, I am so sorry that you had such a horrible ER experience with your AFib. I have found out now if I am having a real bad episode, I tell ER staff that I am having chest pains and they will roll me directly into triage I jsut had an episode tonight but I controlled it at home. Last ER visit was in Dec. I have had three at home so far. As soon as mine starts, I go lie down & sip on cool water & listen to meditation tapes and it has worked for me so far. I am curious why most everyones attacks are in the evening and never in the mornings. Good luck & Better health

Comment by Peggy Kovac

I had one ablation lasted a few months
going for 2nd in May.My episodes come on
at night.gaby61@aolcom

Comment by Bonnie Lander

Is it true that all providers of service do NOT do ablations on patients over 70? Why is that the
rule?

Comment by Jeanne Jackson

Iam 73 and having 2nd ablation in May2010.
gaby61@aol.com

Comment by Bonnie Lander

anyone that has had ablation that had TEE first?

Comment by Bonnie Lander

Hi everyone, I’m a sufferer of AFIB, female and 69 years old, and like everyone else I hate it with a passion. No one understands how debilitating it can be, and my specialist is a bit ho hum about it. I get attacks every 8-10 days and currently take flecainide, but not the dose I’m supossed to as I still work and side effects make me zombie like.
If you get the AFib at night it could me you have Vagal AFib, which is what I believe I have.Tell your Doc and he/she will probably scoff, cause they have no idea what really causes it and why!
Google Vagal Afib and you will get plenty of info about it. A really good site is Hans Larsens,as he has suffered for years and has written many books about it.
Whatever type you have it’s a nasty condition to have, so just try and relax when you get it and lie down and play some good music, if that doesn’t work I usually go for a brisk walk huffing and puffing my way around the block. On the odd occasion it has kicked back into SR after this.
Take heart and be brave.

Comment by JOY

enjoyed your story very much.Good luck
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Comment by moving company - movers montreal - Demenagement

I stumbled upon this post a minute ago… Thank you. I am in Afib right now. My dr. had me to double my Sotolol and ‘kick back’ for the evening …and hope that it was enough to kick it back into rhythm….so far….nope. This is my known second episode. The first was last Oct..and I had to have a ‘cardioversion’. I am apprehensive… maybe I have read too much… I just am scared to death of strokes…. My grandmother died of diabetic related stroke in 1956. That was a lot for a small child to witness… That is burned in my memory. I want to do all I can to protect myself. Does anyone have input? My hubby and I were going on a trip tomorrow…it is postponed… This Afib makes me afraid to leave home… How were you able to travel confidently?
I know I sound like a crybaby…. normally I am not…Wish me luck. Thanks for listening.

Comment by Cheryl

happy every day! sunshine your life!!

Comment by basher521dunk sb

I stumbled upon this post a minute ago… Thank you. I am in Afib right now. My dr. had me to double my Sotolol and ‘kick back’ for the evening …and hope that it was enough to kick it back into rhythm….so far….nope. This is my known second episode. The first was last Oct..and I had to have a ‘cardioversion’. I am apprehensive… maybe I have read too much… I just am scared to death of strokes…. My grandmother died of diabetic related stroke in 1956. That was a lot for a small child to witness… That is burned in my memory. I want to do all I can to protect myself. Does anyone have input? My hubby and I were going on a trip tomorrow…it is postponed… This Afib makes me afraid to leave home… How were you able to travel confidently?
I know I sound like a crybaby…. normally I am not…Wish me luck. Thanks for listening

Comment by basher521dunk sb

baby ,stay strong!

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Comment by tommy

I know you wrote this a few years ago, so I hope everything is going well for you with the afib. I am a former college athete who’s very, very brief pro career prospects where dashed after my senior year by afib. I stayed in rhythm again for 5 years, but then I began going out every couple months. I have since (in ’09) had a pacemaker put in to help, which helped for a little over a year, but now I go out every couple of months again. More Sotalol, aspirin, magnesium, etc. I’ve tried just about everything; no alcohol, more alchohol, no caffiene, no chocolate, vegetarian, the list goes on and on. I’ve finally realized that it doesn’t matter what I do. I’m 34, run 15 miles a week, lift, so it’s odd when people here me say I have this heart issue that no one else has seemed to have heard of. Good post, thanks for sharing.

Comment by David




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