Living with Atrial Fibrillation: What are Your Experiences?

Posted by yeb @yeb, Sep 1, 2024

I’m 74 and have just been diagnosed with chronic atrial fibrillation. My pulse rate usually stays between 75-100 and I’m taking 5mg of Eliquis twice daily. My cardiologist says there are no good meds for this type of Afib. I’m wondering if I should consider cardioversion, ablation, or just live with it and stay on the blood thinner? Anyone have experience living with AFib long term?? Thanks!

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@margaretfriel

Thank You for adding your comments.
I've Walked in your Moccasins ... It took me 15 months to "De-Tox." from all the toxic Prescript. Meds. they "threw at me" (At your Same Age) ... finally I was thinking clearly again. I decided to drive 100 miles from my home to a Larger City where there was a Hospital well-known for Excellence in heart care. The Cardiologist I saw looked over all my test scores & records, asked a Lot of questions, then finally advised ... "Meds aren't always the answer for All A-Fib patients. As long as you Aren't having discomfort (or pain), as long as you're able to live a Normal Life without drugs or procedures, my advice - what you're doing now is FINE. Get plenty of sleep, go for frequent walks or some other sort of exercise, keep your weight in check (I'm just a few #'s over Normal, but active), continue your healthy diet, & check in with us about every 6 months. We'll do a simple EKG, if everything looks good, you'll be on your way. IF (or When) things change, seek medical help. Potentially you could live a very long & active life with A-fib not needing Meds OR any of the other devices available to help hearts when they slow down.
When I came home a family member & 2 friends commented, "What Did He DO? You Look So Much Better than before you went!"
My response: 'He Simply Re-assured me, my Intuition was my Best Medical advice. IF (or When) I Need Help, they're there to help me.' That Re-assurance & Peace-of-mind is Far Better Medicine than all the Pharmaceuticals I wasted $$$$ on over the past 4 years!
Ruth, Best Of Luck to You & May you find a Medical Professional who will give you that same Reassurance & Peace of Mind.

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Thank you SO much! I have no symptoms, no discomfort, no quality of life issues, take homeopathic remedies and never feel my afib. Everything tells me to just keep on living!!!

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@janlm

I'm 87 now & have had afib for many, many years. It finally reach the permanent & persistant stage but I am now well controlled with the blood thinner dibagrantin (pradaxa), & the usual blood pressure & colestral meds. Did have to go on water pills as too much sodium in the diet can cause problems. I am also on my second pace maker to control my heart beat. I would not consider any ablation at my age & all my cardios & internst at kaiser agree. I am still in my own home . The persistant stage of afib can be annoying as i also have tenistis howling in my head, getting sidetracked helps alot. I am so sorry some of you have lots of problems with this. It helps to read up on everything you can find on afib so you have a better understanding of it & what the options are. The last cardiolist told me to come back in a year unless i noticed a problem. My last echocardiogram was very good.
Now if someone has any ideas for dealing with this arthritus chewing on my old bones i would love to hear about it about it. Take care out there. Afib doesnt have to be the end of the world.

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To janlm….

This isn’t a forum for arthritis, though MCC must have one. I have had physical therapy, pumped iron for the last 35 years, had massage therapy, am slim and have to eat well bc of GERD and other gut problems, but around five years ago the arthritis in lower back progressed to point where I need meds for quality of life.

Tylenol doesn’t do much. There was a study done around 2019, I think, that studied a group of arthritic patients while administering dosages of hydrocodone ER. You could google around that if you have reached a point where you are desperate for relief.
My pcp has no problem prescribing these kinds of meds for me. I am 89. You have to be super careful, of course.

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I lived with AFib from 2005-2010. I started taking Magnesium Glycinate and a daily Aspirin in 2010. I very rarely have an episode of AFIb. Just an occasional "blip", as I would call it, maybe once a week.

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@maa25

He knows he is in AFib all the time. They have tried the gamut of medications and none have worked. He was on Flecainide for quite a number of years which seemed successful however, after about eight years, he had some side effects so they took him off of that. He was on different medication’s, including amiodarone which did not keep him in rhythm. I hate to say this, but after the Covid shot is when his Afib got out of control.

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Sorry you got the vax. Do not need to apologize for saying the truth.

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@lindy9

Margaret - Your story and other similar ones are exactly why I do not run to the doctors for checkups or treatments for what I may or may not have. The only difference in my story is, after one bad experience, I did not continue, but read the handwriting on the wall and read, read, and read all the info I could find.

For me and irregular heartbeat, I quit coffee, colas, and anything containing caffeine. And increased my drinking of water. I rarely feel any irregularity and lasts maybe 5 seconds. I do not need to have a test to tell me I am okay. I do get a blood test about one time a year from a lab and examine it as you don't need to be Einstein to figure it out. To me, getting tests when I feel well at age 76, is like taking your car to a mechanic because it hiccups once in a while. They do their dance with a calculator and dollar signs in their eyeballs. My late husband who was an honest mechanic told me that people have their engines often replaced when the solution is to tighten a gas cap and clear the blinking warnings. Being dumb is not a virtue. One customer insisted that the air be removed from her tires and filled up with fresh air once a year because her late husband did it his whole life. Let that sink in.

Your story reminded me of a co-worker when I was in my 20's. I listened to her complain of UTI's and horrible treatments she had every 2 or 3 months. After a few years, I asked her if she ever ate any fruit. She said No. And never any veggies either. I had watched or heard what she ate at lunch every day and was just junk food.

One Friday, I went and bought her some time released Vitamin C and some fruit. On Monday morning she ran to my desk and told me that I had helped her in 3 days more than doctors had helped for years.

Take my stories to heart or leave them. Life is made up of choices. Unlike doctors and drug makers, I do not earn a dime for relating my experiences.

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After 3 years of being shuffled from one Dr. or Physicians Assistant to another, numerous Prescrip's (causing countless side effects), I learned that in a Large City 100 miles away there was a Clinic treating heart problems that had recently been rated equal to Mayo & Cleveland Clinics. I picked up my phone, called them & asked for an appointment. The person with whom I spoke asked Numerous questions, then scheduled me with one of their Cardiologists whose Specialty seemed to be in line with our discussion.
Last week my daughter & I saw their Cardiologist (a few hr.'s prior I took files/info. from previous Dr.'s for him to look-over ). The appointment lasted an hr., he asked Good questions that 'got-to-the-heart-of-the-matter', gave his opinion, & summarized by saying he didn't understand why all the Dr.'s/Physician Assistants prescribed all those Med.s. His advice: Continue eating the healthy diet (I've eaten For Years), maintain the healthy weight (I've maintained for years), get plenty of sleep, continue to get moderate exercise, & If I'd like, come back in 6 months, he'd like to follow my 'case'. Then he outlined some of the symptoms I might experience if the A-Fib is no longer stable.
Whew! Finally a Dr. who gave me clarity & prospective.

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Hello
In October 2010, I wore a 30-day heart monitor that showed I was in atrial fibrillation 100% of the time. (Unfortunately, that’s starting to feel familiar again.) Dr. Lishan Aklog, then at St. Joseph’s Heart and Lung Institute, performed open maze surgery and replaced my mitral valve.

Shortly after my recovery, Dr. Aklog left St. Joseph’s, and I haven’t had a follow-up with a cardiologist since. He had encouraged me to get regular exercise, and true to my obsessive nature, I dove headfirst into road cycling. Over the next four years, I averaged 125–200 miles per week—commuting to work, riding weekends, and participating in charity events. I typically averaged 18 mph during 100-mile rides, and I estimate I logged around 17,000–18,000 total miles. Eventually, my work schedule changed, and without the commuting element, I lost momentum.
Fast forward to the night of April 10th before I woke up on April 11 a switch flipped and all my average heart rates jumped 20-30 bpm it varies day to day and has remained that way. I’m back in Afib 100% of the time have an appointment next Friday. I do not and have not taken any medications like blood thinners since the surgery. I will be sitting in a recliner and get a high heart rate alert from my Apple Watch. I purchased a KardiaMobile 6L and have 107 tracings since April 20th. Afib 61%/65 detections, Tachycardia 30%/32. My resting heart rate used to be 59-64. The last WEEK resting rate has been 79-96 with a daily range 48-179. I’m doing everything now that I was doing before the switch flip but only 25% of it.

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@relax2

I’ve always found most doctors especially those who are surgeons or specialists will say very little about meds and procedures unless you ask questions. To ask questions you have to be well informed. You could read all day on afib and arthritis and meds and still not read everything. So many new meds and procedures coming out almost daily. Research everything including your doctors

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Can you provide any sources? I’ve done research had open maze surgery in 2010 for afib, worked up until the night of April 10th, now I back in Afib 100% of the time. Confirmed with a 24hr heart monitor which was much better than the 30 day one I wore back in 2010.

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@ruthbruns

Thank you, just went to the doctor and got all the 'bad news' feel just fine and not attached to living forever - am 84 and have had a busy life. BUT "they" are insistent that i 'need' this procedure for my Afib. I feel I am caught between "a rock and a hard place" thanks for listening!!

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Hopefully you can find support to make your decision heard. I’m 70 just had Afib returned after 14+ years. Had open maze surgery to correct being in Afib 100% of the time, worked for 14.5 years now I’m back to afib 100% of the time. I refuse to take medication and swap possible remedies for ensured side effects. I hope you find the help you need.

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