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

4 years ago I went to my Internist for a 2-year check-up (82 yrs. old), a Physician Assistant saw me. At the end of the appt. she sent me to "imaging" for an EKG ... diagnosed - A-Fib. The P.A. immediately put me on Warfarin, & told me to come back in a couple of days to "talk-about A-Fib". The Practice kept calling-cancelling & re-scheduling the appts., ... finally I called a local Cardiologist for an appointment to learn more about A-Fib, & see if I could get Warfarin changed, by then I was having TERRIBLE Side Effects! 3+ months had passed since the initial diagnosis. The Cardiologist advised me she couldn't change a prescription another Dr. (Phys. Asst.) ordered! I called the Dr. of Internal Medicine & told them I NEEDED an appt. A.S.A.P., they asked "Why", then said 'No appt.s available for 3 months, go to an ER"... So I got in my car, went into their office & asked for my files. I told them I would find a New Dr. if they wouldn't see me about a prescription one of their P.A.'s had ordered.
When I saw the Cardiologist I asked her to refer me to a New Internist, & we got that Prescript. changed.
Over the next 2-1/2 YEARS I was referred to 5 more Dr.'s or Phys. Asst.'s, each would change what a previous Health Professional had prescribed ... all together 7 Dr.'s or P.A.'s, 7 Diagnosis', & 7 different Prescript.'s - ALL of the Med.'s resulted in Severe Side Effects: 4 blood thinners, 2 Prescript.'s for high blood pressure & a Very Bad reaction to Iosvue 370 Dye injected for a 3-D CTA. At that point I HAD HAD ENOUGH!
Not only did I stop taking Prescripts., I've stopped going to Doctors! It Frustrates me that when I was diagnosed 4 years ago I had NO awareness (NO symptoms) of A-Fib ... 3 years of being referred by one Medical Professional to another, 2-1/2 years of dealing with TERRIBLE Side Effects to Every Medication prescribed, I'm Very Much Aware I Have A-Fib, but I Feel The Medical Profession has "bounced me around like a Tennis Ball", put me thru A Lot of Pain, Confusion, & Misery with all the TOXIC Med.'s ... My Body & I NEED to De-Tox. (find a "New Normal"?) & start all over.
When I feel I Need Help, I'm Leaving Town & going to a Major City Heart Clinic such as Rochester - MAYO CLINIC, ST. LUKES in St. Louis, or CLEVELAND CLINIC.

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I sympathize with your situation and think you’re right to get to Mayo or Cleveland Clinic, something that I myself plan to do if and when the battery in my pacemaker gives out before I do. I’m 89 and finding the cardio options here in Buffalo dismal.

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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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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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@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!! Your experience is just like mine and with family support I have decided to tell my doctors 'I will wait 6 months and revisit what they propose then.' That takes so much pressure off of me! Thanks again

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@jackiet

I sympathize with your situation and think you’re right to get to Mayo or Cleveland Clinic, something that I myself plan to do if and when the battery in my pacemaker gives out before I do. I’m 89 and finding the cardio options here in Buffalo dismal.

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Jackiet,
Let's be Realistic, Dr.'s, Cardiologists, & Pharmaceutical Companies aren't there for the philanthropic rewards they might receive, it's a Multi-Billion $$$ Industry. Every patient who walks thru their doors can potentially be a $$$$ (Profitable) patient or a "nickel-dime" one who is taking up space in their world. (I believe that Occasionally, their Oath "Do No Harm" is put-to-the-test)
3 or 4 years ago I had a discussion with my Dr. of Internal Medicine ... & I said to him, "Dr., I Don't come from the Medical World, my background & my Family-before-me are from the Business World. If I Didn't Know Better, It looks to me like the Pharmaceutical Companies are Commissioning Dr.'s for EVERY Prescription they write. That's why Dr.'s are SO EAGER to write a prescription for every little ache & pain patients bring to them. Is Big-Pharma's 'Wagging the tail' of the Medical World Today?"
My Dr. looked at me for a l-o-n-g minute, crossed his arms over his chest, & with a Very Serious expression began shaking his head YES as he said, "Ethically I'm SUPPOSED to say NO!"
Ever since He & I have a Very frank, honest, & (oft-times) Humorous relationship!

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@jackiet

I sympathize with your situation and think you’re right to get to Mayo or Cleveland Clinic, something that I myself plan to do if and when the battery in my pacemaker gives out before I do. I’m 89 and finding the cardio options here in Buffalo dismal.

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"Yes, Yes! You Go Girl, & Lot's 'A Luck. Truly Hope you find the Answers You NEED!"

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@lindy9

Amen. But you may live longer without the drugs.

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Oh Thank You. That is how I Feel ... you're The 1st Person who has actually SAID That.
Bless You.

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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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Thanks for comments on Afib as I also have. For arthritis I would recommend careful movement or exercise. You might check with a therapist. I believe this might help reduce inflammation. There are some salves like caster oil that might help reduce inflammation. There are many home remedies you can check out on line if your pcp cannot assist. You can also get some possible ideas on perplexity.ai
Hope this helps

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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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Yes , it’s not usually good news . Remember you’re in charge not your doctor . Ablations are funny things, often having to be repeated more than once. I’m sure your doctors have considered your age and overall good health. But ultimately it’s your decision . Best of luck.

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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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