Almost 4 weeks ago, I had an episode of atrial flutter tachycardia at the very end of the three-month post-ablation blanking period. It was mild and I didn’t experience the typical awful fatigue and brain fog. I felt okay. My HR was steadily 24/7 104bpm for two days, then 115bpm for four days until I had a CV that put me back in NSR, where I remain.
The day after the CV I had a consultation with the EP Nurse Practitioner. We discussed medications, deciding on PIP (which I have not had to use as I’ve stayed in NSR since the CV) and other things—much of which consisted of my bringing her up to date on my case
Here’s my issue:
When I read the NP’s notes of our consultation online a day later, I came across this sentence, quoting exactly: “I’m not very optimistic she can maintain NSR.” Wow. That was a bummer. It’s another way of saying she predicts that the ablation will be a failure and I’ll return to Afib.
So I got online to read on NIH/PubMed articles about reverting to Afib during the blanking period. I discovered that reverting near the end of the blanking period can be predictive of a return to paroxysmal or persistent Afib by six months out. Bummer. I was quite downhearted—even though in NSR and feeling fine.
But then….I decided to go back to the studies and take a second look. One of the studies reported that 76% of those who have Afib reversions during the blanking period are likely to revert to Afib by 6 months post-ablation.
First, I said to myself. What makes the NP think I won’t be in the 24% who don’t revert? Given my situation, I could easily, I believe, be in that 24%.
So next, I looked at the cohort, looked at who was being studied. I found a staggering list of people with co-morbidities: previous heart attack or stroke, high blood pressure, diabetes, liver disease, kidney disease, COPD, obesity, etc. That is not my cohort. I have no co-morbidities. Even my heart is healthy except for, as my cardiologist put it, “Good news! It’s just only Afib.” Predicting that I most likely was going to have a failed ablation based on statistics representing people very different from me seems to me an error of judgment. I am a cohort of one. I need to be seen as an individual and a whole person.
I am now starting to turn to functional medicine, for it sees each person as a cohort of one and the only relevant research in seeking healing that person is research into the substrate causes of that one person’s medical problem.
If I were in a research cohort, it would consist of people who eat a nutrient dense diet with lots of vegetables, fruit, and nuts; who in their 80’s walk 5000-6000 steps a day including hills; who have good sleep hygiene with no apnea; who meditate at least occasionally and mindfully practice mindfulness throughout the day; who manage stress well, including biweekly psychotherapy sessions; who have a weekly massage; who regularly see an acupuncturist, as well as a craniosacral therapist for TMJ and a PT for balance issues due to aging; who are engaged in their lives, physically, spiritually , socially active. And have two dogs and a cat.
What I’m trying to say here is that we can’t let medical people just casually file us away or put us in a box with a label:”Likely to fail.”
I’m also trying to say that there is much we can do to heal ourselves in ways that do not depend on pills and procedures, and those things matter and should be taken into consideration when medical personnel are evaluating a patient.
The NP who wrote she was “not very optimistic” about my chances for a successful ablation does not know ME. Her comments in her notes—comments which she had not said aloud directly to me explaining why she diagnosed probable failure—were, in my hindsight opinion, hurtful to my hopeful, positive attitude (which is important in healing) and ill-considered in their disregard for who I am as an individual patient, not just as a statistic and another old body with a medical center ID number.
What we don’t need when we travel this Afib journey is health professionals predicting failure without knowing the whole person, and speaking directly to that person and providing substantial evidence to support their negative evaluation.
That’s my tale. I have chosen to dismiss the negative prediction as simply poor medical practice. And meanwhile keep my fingers crossed real hard that I’m in the percentage who revert in the blanking period’s third month, convert, and do not revert again by six months or a year. 🤞🤞💓🎶 🤞💓
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Sweetmelody
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Please try not to overthink this . For a start atrial tachycardia is NOT AF and in fact quite common post ablation for AF. I had to be cardioverted with a rate of 140 about three month after mty third and successful ablation and that was in 2010 and no AF since. Be positve and ignore negative people.
Ignore them I shall. Thanks. Actually, when I went into the hospital for the CV, there was discussion among the CV team about whether my ECG showed sinus tachycardia (no CV) or atrial tachycardia (yes CV). I think the call was a tossup. In other words, I did not have a big aflutter problem, not like in the past when my HR got into the 150's and stayed around 130bpm. My heart had just gotten a bit off course and needed a course correction in the course of its healing. I feel confident that my minor tachycardia episode by no means dooms me to a return to Afib--which I have not had since my first ablation, only aflutter, which the second one addressed. I feel on my way! Thanks for your encouraging words.
The study you read refers to late blanking occurrence of afib. You had an aflutter event. Not uncommon and not predictive of your ablation chances. Be positive.
I agree completely. I think I had a brief flutter episode. I did have a bumpy road immediately after the ablation, but it was soon controlled. I think it may largely have come from having a Watchman implant at the same time as my second ablation. My heart was wounded and needed time to heal. A little bump, especially still in the blanking period, is not something I believes warrants a PROBABLE FAILED ABLATION red flag. I had a "flutter event." That's it. Thanks so much for your encouragement.
I hear you. So much of the literature refers to people with co-morbidities (none of which I have, so far) and even the last cardiac nurse I saw assumed that I have a chronic weight problem (no; I was normal weight when I was diagnosed with AF and for a decade afterwards).
There is so much information to wade through (and my brain isn't working at full speed because the meds make me fuzzy), and nobody on my cardiac team has time for thorough discussions.
Another cardiac nurse told me two weeks ago, when I queried why I haven't been referred for a second cardioversion during the long wait for ablation, "it's a risky procedure so we only do it where we think there will be some benefit." But today I received a letter from the registrar, confirming that he has discussed it with the consultant and I am in fact being referred for a new cardioversion. Is everybody on the same page, or are they just too busy? Or is there some gatekeeping going on?
I have also been thinking functional medicine might be worth looking into. Also acupuncture, which I had for years, but not since I went into persistent AF.
And I hear you! We’ve had similar experiences. I had to go two months in tachycardia 130-140bpm while waiting for my turn in the ablation queue. A CV wasn’t offered because the last few hadn’t held more than 1-2 weeks. I spent two miserable months, on drugs that made me feel crummy and didn’t have any effect and in tachycardia 24/7. I think a CV or even two while I was awaiting the ablation and not being on drugs that had no effect on the tachycardia would have helped me get through that waiting time much better. It’s hard to understand why some decisions are made.
In addition, I knew in September last year that I needed a second ablation, this time for flutter. I couldn’t get the EP folks to agree until late November—putting the needed ablation back three months, and then another three months in queue. For me that meant six crummy months of feeling like a dishrag. But that’s just how it works, I guess. I had to work hard at counseling myself patience.
In the end, it’s working out, but the road has been bumpy.
Thanks for sharing your experiences. It’s always nice to know we’re not alone in our travails.
Good morning, I have just been put on the list for an ablation.I agree with you that diet is very important. Can you give me a rough idea of things to cut out. I no longer drink alcohol or drinks with caffeine. I am 95% vegetarian and am now trying to keep sugar intake down. Any other advice greatly received.
Hi I am 84 years old thinking of ablation after struggling to get on meds I can tolerate. I was told permanent afib. Stay positive. I feel good except for afib and still working. I have been told by PAs that nothing can be done for me. ???. Now just wait for appointment with Cardiologist. Always read notes after and showed I had chest pain (never!) also that I will not go back in nsr. One of my Customers from Canada told me they write you off when you get older. Stay positive. I was told low chance of ablation working but later in notes it said they recommended it??? I am going to discuss at my next appointment. You are encouraging. 🙂
You need to find the right practitioner for you. I had to “shop around” before hitting gold in my current cardiologist, who connected me with my wonderful electrophysiologist. Stay proactive. Don’t believe everything certain practitioners say. There is not unanimity among cardiologists or PA’s about what the best courses of treatment are. Find one who aligns with your goals and needs. For me, that’s Step One. Good luck!
Also, I’m 82 and in February had my second ablation at a university medical center. A nurse told me that some of the doctors in electrophysiology have a cutoff of 75y/o for performing ablations. My doctor is not one of those. I believe he sees me as an individual and can see I make a good candidate for ablation given who I am, my physical condition, and my lifestyle. Age should not prevent you from an ablation if that’s your best course. Just gotta find the right doctor—that can be the hard part!
I was very lucky in that a GP at my surgery trained and practiced in Lifestyle Medicine so we had the best of both worlds. I have been an advocate of Lifestyle Medicine, not only foods, for the last 8 years. Paying attention to nutrition, sleep, exercise, stress management and breath work will give you the best chance of overcoming any possibility of arrhythmias returning. On its own, Lifestyle medicine was not enough to heal my arrhythmias and I needed a pacemaker but it helped SO MUCH and now I take no heart drugs apart from anticoagulant.
A consultant orthopaedic doctor once told me in 1993 after a car accident that I would be riddled with arthritis, unable to move my neck and need surgery to fix my neck and spine. I decided that was NOT going to happen so I worked at it and my strength and flexibility today is as good as if not better than my physio! Or so she tells me. Yes, a have a little arthritis but mostly in my hands and feet.
Hi. Having had 6 ecv’s and eventually an ablation I’ve come to the conclusion that like you, I don’t believe everything the medical profession tell me. Cold drinks caused my af and I had several doctors look at me like ‘ this guys in denial. ‘ only when I finaliy saw the main cardiac consultant did he confirm that i was right. ive had a hospital nurse say 'we're sending you home because youre now in nsr and I had to say ' no youre not, im still in full afib mode. only after she did an ecg did she believe me. ive also had amazing doctors and nurses. its luck of the draw sometimes!
Hey you deserve to beat any odds. Why because you are an example of a otherwise (AF) healthy individual.
Would be pertinent to write a note to the nurse practitioner?
In a stroke Ward a Junior Doctor wrote we have never had a patient with stroke and speech problems. I had to look up Joy's history to see if there was any senile tendencies!
I was singing and talking alot.
Of course he found none and I rung and talked to him to have him remove it . I explained that my Speech Therapist on day 1 was to sing and keep talking as much as possible.
He did not rewrite his report.
Another my locum dr 80s who has had AF explained that Bisoprolol will improve the dilation of the left atrium causing the AF. Relating this to a young hospital cardiac specialist he snared and said "never'. The locum gave it 5 years. I am at 3 years.
I'm holding out for improvement.
Already the 2nd Echo 2 years apart shows that my overall size of my heart has reduced to be normal range.
I'll keep this forum posted at 5 years or when I get my next ECHO.
Go 80s year young lady! Keep healthy and maintain your positive mind. Keep loving, patting and cuddling your 3 pets.
Please leep us posted. You will stay off alcohol, fat laden diet and smoking and show them in diet, exercise and care of yourself. Take it easy as you deserve a life of nil stress.
Such a cheerful note even among all this afib stuff we go through! Thanks.
I did not respond to the NP. I have already taken the EP department to task twice, in substantial ways that reached upper echelons and brought changes. If I jump in again with reasoned criticism of the way the EP dept does its business, I’m going to become known as “That woman again!”
Instead of addressing my issue with the NP or the EP Dept, I made an appointment with my cardiologist. That is where my questions and misgivings belong at this point. I see her this afternoon and hope to get some answers, some perspective, a review of where my heart is now and what my options are in the future. Compared to that, telling the NP her comments were injudicious and unprofessional seems like small potatoes. The word will get back to her through the people who matter without my making a direct issue with her.
Ah, what we go through navigating the medical system.
that’s is hurtful and with no regard for the fact you’d see this. I’d be mortified reading it and thrown into a panic, fortunately you’ve been so astute, and done a big read up.
24% is a quarter thereabouts . And that’s not tiny.
So do I. And I read them. Sometimes I wonder if some of my EP’s nursing staff with whom I have appointments have read them. Seems to me I spend a lot of our appointment time bringing them up to speed. I figure I’m the one who has to have the information about dates, procedures, current medications, proposed treatment plans, etc., at my fingertips. I agree we need to stay on top of all information relevant to our care, at least as much of it as we can understand.
But when asking for an email of clinician's letter surgeon the receptionist was told to tell JOY, me that I should request copy through hospital!
I would have a copy coming after 8 days but with a ManageMyHealth Alert for this letter I could not read it.
For instance going through hospital has steps
1. Request copy from records. Fill in form and prove you are you.
2. As I did not know date of letter it was difficult to state exact date of letter.
3. Wait 1-2 months for it!
She said my Clinic was 3rd Party.
No I said the surgeon writes and sends to clinic No.1.
Finally I had a ring from the Dr Head of my Clinic. We had a friendly chat.
Since being recalled I have received 5 letters from my surgeon.
One which was addressed to me personally was never received. The outpatient's surgical handled me in Kaitaia the sub hospital.
Its important to get updates. I asked why I couldn't get them emailed from my surgeon and they said that "we are nt set up". Northshore Hospital sent me an email first to establish it was me.
I've had AF since my late 20s and never in that time have I fallen into any "typical" category, whether in terms of age, lifestyle or other triggers, symptoms, response to medication or response to procedures.5 months after my third ablation, which was deemed a failure, I went into NSR, and have stayed that way since.
I have always been realistic rather than go with blind optimism, but I think it's good to keep the hope. 🌸
Exactly. Each of us is “a cohort of one.” Statistics are interesting and have their place, but any given single individual is unique in one way or another with their own pathway that statistics are unable to predict.
Totally agree with you! There is not much research about AF because it's a very rare condition in healthy people. I'm young and very healthy, I was found in persistent and I've been treated like a desperate case by NHS and private. Also the approach in the UK is quite negative regarding therapy (CV and ablation), in my opinion this is to discourage people from choosing to do something about it. Truth is regarding Ablation, there are not enough data and not enough time span (procedure available since only 20 years) to really understand the efficacy of the ablation. Well done you for digging the actual research papers! I had the same feeling when I realised I was being treated like people double my age with serious health issues, completely disregarding my quality and life expectancy too.
I have to disagree with one thing, healthy people get AFIB, it is not a “unhealthy person” condition, much of it is hereditary for example. I am extremely healthy, athletic, eat right, but my father and his mother both had it like I do. Yes, bad lifestyle will help it to manifest more readily, but if your genetics are predisposed, there is nothing you can do but deal with it.
Sorry, numbers are clear: people below 40 years old incidence is 0.5% and many of these have other conditions. Just to have an idea of the numbers, incidence of arthritis on population below 44 years old is about 5%. So the healthy ones are extremely rare. No one in my family has it, and genetics is not enough to give up on therapy in my opinion. Please quote numbers if you want to reject what we have read in scientific papers.
I don't want to get into a big argument with you, but my only problem is you saying that afib is "very rare in healthy people". I think this is an exaggeration, anyone can get afib. Is it more prominant in generally "unhealthy people", I'm sure, like most things medical. And yes, AGE is the #1 risk factor.... like your stat shows... but there are plenty of older healthy people who get it. Do people with other health issues generally have more issues with afib than very healthy people, again of course, like most medical conditions. But again, to say afib is "very rare" in healthy people is just simply an exaggeration I believe.
Example one is the hereditary issue.... I started having afib symptoms, as did my dad and my grandmother, when we were all in our early 30's. My grandmother lived until 95, my dad is now 85 and doing well, and I am 60. We are/were all very healthy with no other underlying heart conditions, and as my EP at Cleveland Clinic Sergio Pinsky told me, afib is obviously genetic for us, like it is for many people. I like my father had low blood pressure, low cholesterol, very active and pretty darn healthy, other than afib. We are not "rare" cases, according to one of the most experienced EP's at Cleveland Clinic. I'm sure it MORE common in unhealthy people, more likely to manifest, I'm sure. "Very Rare".... not.
Alcohol example two... plenty of younger, healthy people get "Party Heart"... afib. This is not a cause related to general health.
Another example is the relatively high number of athletes that get afib, this is a known phenomenon, and they do not totally understand the mechanism behind it. Most athletes are not "unhealthy people". This is all important for people to understand.
Sadly the internet is packed with negative information. Stay positive and good luck. Maybe you will need a 'top up' - who can tell. Keep up the good work with your positive attitude.
That was a very eloquent argument for a positive mindset! Let's hope that your finger crossing does the trick. I very much expect it will.
I suspect that the one sentence you reacted to was not intended to have quite the power you have attributed to it - but it was presumably not only based on knowledge but also experience. Why it was ever written down in the circumstances is a surprise to me as it seems to add nothing that is clinically important or even useful. It was likely a slip of the mind, in a way - a part of human character. I would always choose the human to the robot, with its AI, so I am generally happy to accept its foibles. "How beauteous mankind is! O brave new world, That has such people in't!".
As I understand it, the "substrate" of an older heart is much more prone to arrhythmias than when it were younger, and one that has already succumbed is more likely still, perhaps even in spite of an ablation. As we age, the inflammatory processes of the body, once balanced so well, now tend to become more easily unbalanced and lead to various health problems, including whatever causes AF. This is also often said to be a progressive disease, which surely can only mean that whatever is happening to the cardiac substrate is progressively leading it to become more prone to arrhythmia.
Out of interest, I read a study recently which suggested that the blanking period can be considered as only around one month in terms of predicting the likelihood of future return of arrhythmia. The real issue, though, is what you discovered - that of the cohorts used in these studies and the immense variability in the individuals involved.
I read the same study, or several, questioning the value of declaring the blanking period to be three months—when the first month is actually more predictive. All of that simply tells me that there’s lots we, including cardiologists and researchers, don’t know yet. That includes the NP who predicted my ablation would probably fail. What an absurd thing for her to do, especially without speaking to me directly with substantiating evidence. Thanks for your perspective!
Yes to all you have said. The lack of knowledge is partly owing to the chronic nature of the changes that lead to AF, many and varied as they are, partly genetic, partly behavioural and so on.
I had to have 2 Drs one performing the op and another to guide when I had my Sling - compliments to Johnson & Johnson ugly mesh removal and Sling removal.
Dr Eva Fong top surgeon to remove I had performing mine.
She will eventually use a robot to assist her. I wanted to be the first but sadly 'it' migrated and into my vagina.
The hospital could have removed it in 2019 when it was up against it. 3 weeks later I had a stroke with AF. Worry, hypertension and Thyroid Cancer all came together!
Was your ablation for AFib? You mentioned a recent occurrence of AFlutter, which is a separate but steady rhythm, and you had a CV to come out of it. If it is in fact AFlutter you experienced recently, they may not have ablated you for that if they didn't know about it during the AFib ablation. Typical AFlutter is easy to ablate with a high success rate if this is something that continues down the road.
If you have not had a re-occurrence of AFib since your ablation, that seems positive to me. Keep up the good attitude.
Excellently said! I’ve lived with paroxysmal AFIB for over 30 years now, and one thing I do know is each cares and each person is a unique, and predictably is difficult at best with AFIB. I’ve had 2 ablations, the first at Cleveland Clinic, I was going in and out of AFIB multiple times a day prior to the procedure, afterwards I was SO much better, but never perfect. Some years I would have 5-6 episodes, some years none. I was happy for 15 years, then it went a little crazy, and had my second ablation. About 3 weeks after, like you I had an episode of SVT and some AFIB. I was depressed, but went on a very low dose of Flecainide, and now it is almost 4 years later and I’ve been completely AFIB free! Doc thinks I can go off the Flecainide, such a low dose he thinks it is only helping with ectopics some, but agree “if it ain’t broke don’t fix it”. My point is, keep doing what you’re doing, live right and see. BTW has your doc suggested taking Flecainide regularly? This might keep you in NSR it has for many like me after an ablation. I have absolutely no side affects with it either it’s a proven safe drug with a long track record. Good luck and keep the positive attitude that’s so important for us!
Thanks for sharing. Very upbeat! I don’t do well on drugs, at least the ones I’ve taken. Bradycardia is often the biggest problem. I feel so much better off drugs that I’m going to stay that way if I can. I’m glad you have a drug that works for you and doesn’t cause you intolerable side effects. We all have to find that right path for ourselves. Congrats on finding yours! I hope I have similar success with the passing of time.
I wanted to stay off drugs also, never took any until 4 years ago, but just thankful options exist. I just meant to say that there are options... and everything is on the table to stay in NSR!
Amen Sweet Melody. I'm 81 and totally agree. Go your own way gal, listen to your body, keep reading and stay knowledgeable and positive and go for it. This AF is just one big inconvenience we have to deal with. Don't let it get into your head.
I couldn't have said it better myself! We are all, indeed, a 'cohort of one', though it takes effort to realise that in today's world of very time limited appointments (when you're lucky enough to get one) with a medical profession who doesn't know you from Adam and who - in my experience - most of the time haven't even had the time to peruse your notes.
Well done, you, for wading in and informing yourself, and for taking care of yourself as well as you're obviously doing. I join you in remaining positive for your future life of NSR!
Thanks, Helen. The “cohort of one” is leading me to an exploration of functional medicine. In my understanding, the practitioner does intensive research into the patient to try to identify the substrate causes of that one particular person’s health issue rather than lumping the patient into a group where there is one-pill/treatment-fits all protocol. Functional medicine also emphasizes food and lifestyle and positive attitudes. In other words, the practitioner looks at the whole person and that particular person’s needs, fitting the remedies to the uniqueness of that person rather than a predetermined protocol. Makes sense to me.
As an RN with husband with hx of A Fib I totally agree with you. We must remember that the patient must take responsibility for his part of the care post ablation. Too many people expect the doctor to fix everything and the procedure to be the cure-all. Our cardiologist here in the United States was very upfront prior to my husband's two ablations of what the reoccurrence percentages were and what he could do to help that be lower. One thing my husband did is stopped all alcohol intake. Not that he drank a lot but we had a cocktail in the evening. But the thing we have attributed most to his stability of the AFib is a new supplement we are taking called c-15. It is also called fatty 15. (Pantedeconaic acid) It's a fatty acid that he is taking in place of omegas. I had done much research on afib and omegas actually can increase your risk of afib so contrary to what we have been led to believe. I can't say for a fact that the c-15 is what has done it, but he has been afib free for the longest. In the past 4 years. Continue on with your self-care because it is so important.
c-15? Never heard of it. I shall investigate. Thanks.
I’ve read the same about omegas. Quit taking supplements years ago and increased my intake of fatty fish. I want my nutrients to come mostly from food, not pills—but I do take some, like B, D, Magnesium, etc. Nothing special. But I’ll look into c-15. Thanks for the tip.
This suggests the opposite i.e. a dose-dependent decreased AF association with one of the main fish oil components namely, EPA. This is what I now take. I'll investigate the C-15 though.
The changing complexities of medicine and most importantly the individual nature of each patient's condition mean that a generalized prognosis on a chart is not absolute predictions of the future.
That is so true. I look for the perspective you shared in the practitioners I hire. I’m looking for allies whose approach to healing meshes with mine. From your comment, so articulately stated, I suspect you do the same.
I had the same right near the end which I couldn't understand as you'd think it would be more likely to happen nearer the beginning of the blanking period. My AF specialist said it was very common and they didn't know why it had more of a tendency to happen nearer the end of the blanking period rather than the beginning. Anyway it resolved itself after a couple of hours and it's coming up to a year since my ablation. Hope yours does too.
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