Living with Atrial Fibrillation: What are Your Experiences?
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!
Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.
My Afib has been 100% for eight months since open heart surgery. I take beta blockers and blood thinners and, other than fatigue and some breathlessness with activity, it's not too bad on medications. I couldn't take antiarhythmics and 4 cardioversions failed. I think I'd rather stick with the meds for myself. We are all different
Sincerest Thank You for your inspirational story. I guess in the past few years I've just put Too Much "faith" in MD's in my community... (I'm about a decade older than you)...when I was young Dr.'s took-to-heart "Do No Harm"! After 2-1/2 years of "Dancing to the Medical Communities' Fandango" I came to the conclusion "Times Have Changed!" Now we Patients Have to be Our Own Best Advocate. At times it's felt like "Snake-Oil Hustlers Are Back In Business!"
Thank You Colleen for your answer (above) to ruthburns ... Your Statement "I know it's scary & there's a lot to learn" is So True. It was a Physicians Assistant whom I saw for a general check-up when I learned I had A-Fib ... during the appt. she sent me for a routine EKG as a part of the check-up, that's when A-Fib was detected. Something in her tone of voice, or what she said hit me like a FIRE ALARM! Then she said she didn't have time to explain What it Was, wrote a prescription for Warfarin-told me to pick it up on my way home & start taking it Immediately, also told me to come back in a couple of days & we'd discuss it, but DON'T GO to Dr. GOOGLE! ... a few days later She Left the Dr.'s Practice on a Medical Leave, & wasn't available for almost a Month! The next person in the Dr.'s office I talked to was equally alarming when explaining A-Fib. Both PA's cautioned me "Stay AWAY FROM Dr. GOOGLE!" Come To US to Talk about this!
Finally I had "Had-It-With them", went to my computer & then called a Cardiology Practice & booked an Appt. That's when I learned that 'A-Fib wasn't A Death Sentence' ... & began to lower my Stress Levels ... it all Began to make sense. The Cardiologist was CALM, KIND, Re-Assuring, & helped me with the Lifestyle changes that have improved my journey in living with A-Fib.
This is a reply to jomack25 ... My Heart Goes Out To You ... (Think I've walked a mile or 2 in Your Moccasins.).
Mid-year 2021 I was 1st diagnosed with A-Fib ... the next 2-1/2 years All I saw was Physicians Assistants, I'd call to make an appt. & I'd tell the Appt. Person I want to see A Cardiologist, but when I'd get there I'd be seen by a P.A. instead. After this happened several times I'd change Clinics ... until I Finally Saw a Cardiologist. It took 2 years, all the while the P.A,.'s would prescribe the "usual Med.'s" for A-Fib., every prescription resulted in Severe Side Effects, 5-6-& sometimes 7 Severe Side Effects with every one! When I finally saw a Cardiologist, she looked at the list of Drugs & all the Side Effects & told me to Stop Taking Everything ... "Lets Let Your Body De-Tox." At the same time, she referred me to a Cardio-Surgeon in her Clinic. The Surgeon ordered a 3D-CTA later that week & said he recommended a Watchman implant. I told him I need some time to De-Tox before doing anything ... & He Asked Me What I Meant by "De-Tox"? I showed him the list of Drugs & All of the resulting Side Effects, he just 'rolled his eyes'! He was Emphatic I needed to have the 3D CTA Immediately, reluctantly I agreed, but after That we Needed to talk about an implant, then I wanted him to describe IN DETAIL thIS 3D CTA , he told me it was little more than an X-Ray, during the 'scan' the Tech would inject a little dye, but it'd flush out of my system in a matter of 8-12 Hours: "No Big Deal". WRONG! That Dye: Isovue370 landed me in bed for 5 Days... then +- every 6 weeks I'd have Other issues. I looked up Isovue370 those same reactions were experienced by Other Patients who'd had Isovue370 injections. With That I Had HAD It! Haven't been back to Cardiologists Since (that was 16 Months Ago.) The Next Cardiologist I plan to see will be at either Mayo or Cleveland Clinic, which will require traveling 400 or 500 Miles. My feelings ... Cardiologists in my Community: about on a level with "Snake Oil Flim-Flam'ers"! I Have to Wonder how many of Their Patients have ended up either going elsewhere or DEAD!
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
My husband could not have lived with his AFibs and irregulars. He was so fatigued that he could barely move and had zero appetite.
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.
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.
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!
@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.