1. < Heart Rhythm Conditions

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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jefaho | @jefaho | Jun 19 4:20pm
In reply to @teacher2001 "This is for “yeb” I’ve had AFib since 2016 and am now 79 - female. I..." + (show)
@teacher2001

This is for “yeb”
I’ve had AFib since 2016 and am now 79 - female. I had ongoing visits with my cardiologist with heart tests and was on a beta blocker Sotolol and blood thinner Xarelto.
I had extreme palpitations twice a month mainly due to stress. At one point I asked to be put on Sertraline to control the stress and it worked but over time the side effects were awful so I went off it. Finally after waiting two years due to our healthcare system I was booked in for a RF ablation March 4th as an outpatient. The surgeon is American and quite talented. He said at my age I have an 85% success rate. There’s a three month “blanking period” after surgery when the heart is healing and I did get some palpitations but nothing debilitating. One month after surgery I’m off the beta blocker but still on the blood thinner seeing how it goes and will get tested with a holter in a couple months. My cardiologist says I no longer have AFib. Keeping my fingers crossed! So bottom line is if you can get an ablation I would recommend it. Take care. xo

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"My cardiologist says I no longer have AFIB". I didn't think it was a curable disease, so that's news to me?

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2 replies
noga58 | @noga58 | Jun 13 4:47am

Hi I take Eliquis 5mg twice and Rytmonorm for irregular heart beat and nebivelolfor fast heart beat check with ur doctor

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abob | @abob | Jun 11 9:51pm
In reply to @teacher2001 "This is for “yeb” I’ve had AFib since 2016 and am now 79 - female. I..." + (show)
@teacher2001

This is for “yeb”
I’ve had AFib since 2016 and am now 79 - female. I had ongoing visits with my cardiologist with heart tests and was on a beta blocker Sotolol and blood thinner Xarelto.
I had extreme palpitations twice a month mainly due to stress. At one point I asked to be put on Sertraline to control the stress and it worked but over time the side effects were awful so I went off it. Finally after waiting two years due to our healthcare system I was booked in for a RF ablation March 4th as an outpatient. The surgeon is American and quite talented. He said at my age I have an 85% success rate. There’s a three month “blanking period” after surgery when the heart is healing and I did get some palpitations but nothing debilitating. One month after surgery I’m off the beta blocker but still on the blood thinner seeing how it goes and will get tested with a holter in a couple months. My cardiologist says I no longer have AFib. Keeping my fingers crossed! So bottom line is if you can get an ablation I would recommend it. Take care. xo

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I am pleased for you that you are out of afib.

Husband had Ablations, Cardioversion, Amoiderone. Saw EP today, says husband still in Afib with flutters. Afibs cause Left Atrial Enlargement (LAE) and LAE causes Afib.

EP follow-up visit in 6 weeks and will re-evaluate.
Concerned/anxious that nothing can help my husband.

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margaretfriel | @margaretfriel | Jun 11 7:42pm

Bless You. Hard decisions are simply re-arranging your Priorities. I Sincerely Hope you've found in the New Community more advantages & things of Interest than Good HealthCare.

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margaretfriel | @margaretfriel | Jun 11 6:57pm
In reply to @gloaming "Great advice by nksneuro! The single most effective remedy (not a cure!) for atrial fibrillation (AF..." + (show)
@gloaming

Great advice by nksneuro! The single most effective remedy (not a cure!) for atrial fibrillation (AF is the abbreviation in the N. American medical community) has been catheter ablation, and this was determined scientifically just in the past few months. In fact, the new saying is that catheter ablation is now the 'gold standard' of care. The single most important act the patient, his or herself, can do is to take great care in choosing the best EP (electrophysiologist). The best EP will be among the busiest locally, if not THE busiest, and will be middle-aged or approaching middle age and be doing between 6-10 ablations every week. Also, he/she has been doing this for at least ten years, often longer. They will also be secure enough to admit to their rate of failure for index (first) ablations. In my EP's case, he admitted to a success rate of about 75%, which means he was admitting that he has a statistical failure rate of about 25% for index ablations. I appreciated his disclosure, and trusted him immediately. I was in the unlucky bunch, unfortunately, but I gave him a second chance (LOL!) and he managed to successfully close off the affected area with scar tissue. It was, as he suspected, a small gap he missed in the first set of lesions he had caused around my pulmonary veins.
Choose the best EP you can drive/fly/cycle/walk/boat to and can afford. Their experience and skill is your best bet of walking out of the hospital later that day feeling like you have your life back.

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Thank You for your suggestion.

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nksneuro | @nksneuro | Jun 11 5:25pm

@margaretfriel I am so glad that you have advocated for yourself and found a skilled, caring physician.
When I retired, I moved to a beautiful mountain community; however, specialty care was absent in the area. So my spouse and I actually picked up and moved to a large urban area with multiple retirement communities. This area has some of the world’s best healthcare.
Bottom line: we patients sometimes have to make sacrifices, and we definitely have to advocate for ourselves in getting good healthcare.

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margaretfriel | @margaretfriel | Jun 11 3:41pm
In reply to @nksneuro "Many of you seem to have had negative experiences with healthcare providers. AFib is difficult to..." + (show)
@nksneuro

Many of you seem to have had negative experiences with healthcare providers. AFib is difficult to treat and very difficult to live with. Ten years ago I was first diagnosed with AFib. I’m a great believer in finding a skilled, experienced electro cardiologist and having an ablation. While there’s no guarantee (I’ve had 2), go into your procedure with a positive attitude and follow doctors’ and nurses’ recommendations. You likely will continue to take medications. AFib can be debilitating so having a good healthcare team that you trust and can cooperate with is key to controlling your symptoms.
AFib requires patience and self care. I wish you good health.

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You are in inspiration, & it sounds like you've found the "Yellow Brick Road" to living with AFib.
Reading your post (above) the Key Element in your advise is: "... in finding a skilled, experienced electro cardiologist ..." I live in a community where a State University Medical School is located. My GP suggested we use the Cardiology Dept. there. From the time I checked in they kept shuffling me from a Dr. to a PhysicianAssistant to another Dr. ... over the span of 2 years each appt. was with a different person (on their Cardiology Staff). Each one would change the medication, order a new medical test, etc., until I finally (Slow-learner-ME) came to the Conclusion "they're just using me as a human Guinea-Pig!" After Asking my other Dr.'s for recommendations (Their suggestions were "All Over The Map), I told my Daughter who lives in a a much larger city to find a Cardiologist near her. She found A Cardiologist at a Fine Reputable Hospital in Her City, Went there & Finally felt confident she found a Cardiologist who Will Be treating ME! Maybe Other people have had better luck being treated at Medical Schools, but my experience was a failure!

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gloaming | @gloaming | Jun 10 9:17pm
In reply to @nksneuro "Many of you seem to have had negative experiences with healthcare providers. AFib is difficult to..." + (show)
@nksneuro

Many of you seem to have had negative experiences with healthcare providers. AFib is difficult to treat and very difficult to live with. Ten years ago I was first diagnosed with AFib. I’m a great believer in finding a skilled, experienced electro cardiologist and having an ablation. While there’s no guarantee (I’ve had 2), go into your procedure with a positive attitude and follow doctors’ and nurses’ recommendations. You likely will continue to take medications. AFib can be debilitating so having a good healthcare team that you trust and can cooperate with is key to controlling your symptoms.
AFib requires patience and self care. I wish you good health.

Jump to this post

Great advice by nksneuro! The single most effective remedy (not a cure!) for atrial fibrillation (AF is the abbreviation in the N. American medical community) has been catheter ablation, and this was determined scientifically just in the past few months. In fact, the new saying is that catheter ablation is now the 'gold standard' of care. The single most important act the patient, his or herself, can do is to take great care in choosing the best EP (electrophysiologist). The best EP will be among the busiest locally, if not THE busiest, and will be middle-aged or approaching middle age and be doing between 6-10 ablations every week. Also, he/she has been doing this for at least ten years, often longer. They will also be secure enough to admit to their rate of failure for index (first) ablations. In my EP's case, he admitted to a success rate of about 75%, which means he was admitting that he has a statistical failure rate of about 25% for index ablations. I appreciated his disclosure, and trusted him immediately. I was in the unlucky bunch, unfortunately, but I gave him a second chance (LOL!) and he managed to successfully close off the affected area with scar tissue. It was, as he suspected, a small gap he missed in the first set of lesions he had caused around my pulmonary veins.
Choose the best EP you can drive/fly/cycle/walk/boat to and can afford. Their experience and skill is your best bet of walking out of the hospital later that day feeling like you have your life back.

REPLY
1 reply
nksneuro | @nksneuro | Jun 10 4:08pm

Many of you seem to have had negative experiences with healthcare providers. AFib is difficult to treat and very difficult to live with. Ten years ago I was first diagnosed with AFib. I’m a great believer in finding a skilled, experienced electro cardiologist and having an ablation. While there’s no guarantee (I’ve had 2), go into your procedure with a positive attitude and follow doctors’ and nurses’ recommendations. You likely will continue to take medications. AFib can be debilitating so having a good healthcare team that you trust and can cooperate with is key to controlling your symptoms.
AFib requires patience and self care. I wish you good health.

REPLY
2 replies
abob | @abob | Jun 10 3:46pm

My husband could not have lived with his AFibs and irregulars. He was so fatigued that he could barely move and had zero appetite.

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